The first step on the journey

Thanks for joining me! Good company in a journey makes the way seem shorter. — Izaak Walton

Life is a little bit like a treadmill; the only way to get anywhere is by putting 1 foot in front of the other.

I’m excited to be starting on my journey into the blogosphere, but I must confess—this is my first foray into the world of blogging! The following commentary comes from snapshots of my own lived experience, and my thoughts on the ideas I present below are ever-changing and evolve as I talk to friends and colleagues in my circle and gain new perspectives. Through this process, I hope to have the courage, strength, and “get-off-my but” motivation I need to prepare a blog. I hope to empower other women with disabilities, and use this as a space for positive, constructive, dialogue. As an activist, writer, scholar, and member of the disability community, I hope to share my stories (funny, frustrating, empowering, or just down-right crazy) with my readers. So, a little about me: Well, I live in one of the largest cities in Canada–Toronto, right in the downtown core. I was born and raised in Toronto, and have lived here all my life, accept when I went away to university for my undergrad and graduate school (Laurier Brantford and Western respectively). I am an avid athlete–I love running, cycling, swimming, hiking, sailing, curling, and dragon boating. The wonderful thing about Toronto is that there is a plethora of sports and athletic pursuits for persons living with vision loss. When I’m not running, swimming, or the like, you can often find me in a coffee shop—I’ve a serious addiction to coffee, and do my best work sitting in a Starbucks or Timothy’s. My work and professional interests center around the intersection between disability, employment, and higher education. I focus my work especially on the importance of mentorship for youth living with a disability, and the transition process from high school to post-secondary or post-secondary to work. But, enough about work, if you wanted to know about my work, you’d be reading my CV! I guess, though, it is difficult for me to separate myself from my work because so much of the activism work I do is informed by my own lived experience navigating my community and my world as someone living with a disability. For me, being able to use writing as a place to share ideas and evoke positive change is exciting, and I hope that in the posts to come, you will find humor, passion, and a space to break down barriers.

Advertisement

Allies, access, and advocacy

Knowing how to navigate the minefield of access and advocacy work can
be emotional and down-right exhausting, not just for us, bot for our
friends, family members, and others who support our work. Knowing how
to support in a way that is non-judgemental, and gentle is an art
form. Over time, I have found there are some ways that are more
helpful than others. For example, for years, I had a friend and
colleague who would say to me and to other blind clients “you should
just advocate for that website to be made accessible, or just advocate
for those forms to be accessible.” For years, I knew the sentiment
bothered me, but I couldn’t articulate why until recently. Often, what
we need is not to be “told how to do advocacy work” but rather
supported and heard in our work. How do you support a loved one or
friend through the heat of the moments just after they’ve been told
they can’t access something because of their disability?

Okay, what does an accessibility barrier mean? Person can’t read
paperwork at the doctor, may be your parent or blind child can’t see a
presentation or things on the board at the front of the class or on
ZOOM. Maybe a relative is a wheelchair user and can’t access the
family Sunday luncheon event because the door of the restaurant
someone picked for Sunday lunch on the reunion trip isn’t wide enough.
Or there isn’t elevator or ramp access for Grandpa’s walker? Maybe
you’re viewing a show on Netflix that is not described or captioned,
or you’re watching a patient at a hospital be told they can’t have the
things they need to accommodate their disabilities, just the things
they need to treat the specific medical complaint they’re there for.

An accessibility barrier can be something as simply solved as
answering a few questions or providing some education or training to a
business. It might be something that can’t be immediately solved, as
in “not today”. Which hurts. You wanted to eat there “today”. You
wanted to read that paperwork “today”. You wanted to believe you would
do well in that class “today”.

Many solutions take days, weeks, months, or years. Many changes take
time to implement, and advocacy takes emotional labour and often
requires us to do a lot of invisible, unrecognized work.

First: What are good support rules to keep in mind for any situation?

Support is simple: ask, don’t tell. As in ask me how I’d like to work
around a website or form that is not accessible. Ask curious,
clarifying, opportunity questions.
Provide them with opportunities to guide you and demonstrate through
your questions that you are willing to be guided and are open to
learning about where they are, you aren’t just going to presume and
decide for them.
Rule one of support is always, always: ask clarifying opportunity
questions. Questions like: “What would be the most helpful thing I
could do for you right now?”
Or: “You’ve just been through a violation of your rights. That must
feel like quite a shock to your system. What would feel most helpful
to you, talking about this or changing the subject, or just sitting
quietly together? I’m here for all of it if you want me to be.”
Be guided by where that person is in that moment, not where they were
before or where you wish they were. Go on their directive, right now.
So, if an offer to talk doesn’t connect, ask if they’d like to connect
right now and in what capacity. If they do, they’ll direct you. Your
role is not to support them in your support structure, but within
theirs. This works by you respecting your own boundaries and theirs
and fitting them together healthily. If something in their boundaries
isn’t within yours, then you’d step back and source another friend or
person to offer support. If it’s kind of in your boundaries but not
your comfort zone, you’d examine that gray area, decide if you wanted
to stretch your comfort zone if the stretch was something healthy or
new, break that boundary if it was healthy and self-respecting while
supporting your loved one or friend, and you’d step into support in
their directive.

If an ask to connect goes unanswered, that’s not the kind of support
the person wants or needs right now. Maybe they need quiet, books,
rest, a meal, coffee, a talk with a BFF, a talk with a counsellor.
If an invitation to just casually chat doesn’t land well, deliver it
with a question around support. “I can only imagine how that situation
must have felt to you, but if you’re willing to sit down and tell me
all about it, I’d love to learn from you how I can help and stop
things like this from happening.” Make the conversation tangentially
one of action, reaction, and question where they have an invite to act
on the issue but are not forced to do it right now.

It’s hard to take offense sometimes around accessibility barriers
unless you’re the one encountering the barrier; I don’t even know if
“barrier” is the right word. I sometimes think these barriers are more
like instances of structural violence. And if the things you are or
are asked to support don’t feel right to you, please remember it’s not
about you. That’s the hardest one and I sound all tough love when I
put it like that: but it’s true. Their access denial and subsequent
refusal to talk to you about it or much of anything else isn’t a
personal affront to you: it’s not about you. It’s about the fact that
we live in 2021 and that person couldn’t access something basic like a
press conference, a movie theater with audio description, a park with
a playground they could use, a hospital bed that was safe for them, or
anything else disability-related. It’s bigger ’n you…
It’s disability rights that the world loves to proclaim we’re
“inspirational” enough to just magically do without and work around.
But we’re not. It hurts every time it happens. And it happens a lot
more than we let on.
When a big one happens, give us space, ask clarifying support
questions with space for us to teach you, and most of all, don’t take
it personally.
If you take anything personally, take the violation of someone’s
rights personally.
And most of all? Just be there and offer access.
“I know it’s not the full experience, but would you like me to
describe that show to you or can I help you with that paperwork?”

Crip Wisdom: Lessons Learned and New Insights Gained

Recently, I’ve been a part of many conversations in the disability community about how, in many ways, the current pandemic has actually made it easier for us to work, shop, and engage with others. A few months ago, the world was suddenly plunged into a situation where our normal was turned up-side-down, and we had to re-imagine a new way of doing, being, and belonging in the  world. For many people, working from home, video conferencing, online shoppping, and the  like became their new normal. I’ll pause here and say that this has been my normal, and the normal for many folks with disabilities for years. Whether it is because we feel a greater sense of ease in virtual, rather than physical space, or physical spaces aren’t accessible, or we cannot locate a support person to accompany us to an event, all of these are reasons we might opt to engage in the virtual world.

This led me to thinking about how the current environment is leading to disability accommodations becoming widely available, not because of some ethical awakening or increased empathy but because now everyone is disabled. If we follow the logic of the social model of disability, we are now working in an environment that is not ideal for the vast majority rather than an unseen minority. I will share some key examples.

Zoom fatigue is the new widespread irritation of working people everywhere. Not all communication is ideally suited to video format, it can be hard to read body language and know when it’s your turn to speak. There can also be technical problems preventing you from hearing or being able to connect with someone over an urgent matter. Connecting and communicating seamlessly with others is a privilege not afforded to many people with certain types of communication, visual, or hearing disabilities, and difficulty accessing information and communicating is our reality.

No doubt after the crisis the majority of people will be enormously grateful to return to having certain communication face to face and yet deaf and hearing impaired people will still be receiving their medical sign language interpretation via a tablet, people with visual disabilities will still receive paper-based forms to complete, and those living with communication disabilities will struggle to be heard and understood.

During this time where we are struggling so much to feel connected to others, perhaps we can review how disabling our society is to the hearing impaired and those who live with visual and other communication disabilities.

Some people are currently uncomfortable wearing masks, either because the mask obstructs hearing and sight, or the mask is claustrophobic or anxiety inducing. It also may not be possible for folks with specific types of physical disabilities to independently put on and take off a mask. It’s not a resistance to the rules that’s the problem, it’s a genuine physical reaction. Surely accommodations can be made.

The literal isolation from society that is causing you to feel lonely and disconnected is how it feels for many of us who are simply not included or accepted because of our differences. Loneliness is a huge problem for disabled people and takes its toll on mental health. Now that we all know better, we must

do more to help.

Flexibility Will Be the Key

For those who have found home working and the absence of a commute positively liberating, let’s remember that when lock down restrictions are eased, we don’t have to spring back to business as usual. It will be much harder to argue that remote working is ‘unreasonable’ as a disability adjustment, and we should note the productivity gains of our less extroverted colleagues right now.

As business leaders planning a return to work, we can sort the last few weeks into categories:

·       What worked well 

·       What was tricky 

·       What would we like to do differently 

Let’s notice those who have thrived at this time and allow them to keep their working conditions. 

Let’s remember how much effort we put into technology in this time, such as alt-text for images, so that those who rely on technology for all communication feel included.

Let’s keep all these options open once we regain the freedom to choose.

During this time, I call on leaders and decision-makers to review the ways in which we are now disadvantaged and use this increased insight and empathy to review what changes could and should be made to support the disabled community both during the pandemic and post-pandemic. 

Creating a community of collaboration during the Covid19 Virus

As a Part of #Covid19 prevention, we’ve been asked to engage in social distancing; this practice is necessary to keep our community safe. It is equally important to reflect on the impacts that social isolation will have on our most vulnerable community members–those in the disability community; older adults; and, those whose immune systems are comprimised. During this uncertain time, please think of your disabled and elderly friends and neighbours who are feeling the impacts of this social distancing even more. Not only are many of us at greater risk from the virus itself, we’re struggling disproportionately because of everyone’s response.

 

I am privileged in that I have the technology skills and financial means to complete my grocery shopping online. That being said, this is not the case for many of my disabled friends who rely on food banks and community meals to obtain food (many of which have been  closed). For those who aren’t able to shop online, they must use public transportation, ride sharing services like Uber or walk. Most stores aren’t within walking distance and using Uber comes with a cost that many disabled people can’t afford. If a disabled person gets to the store and finds out that there’s little to no food, it can take twice as long to get to a store on transit than it would if you were driving. Many disabled individuals have no choice but to get help finding the products they  need, with no idea whether the employee assisting them  is healthy.

 

Using delivery apps, which are a lifeline for many disabled people, are becoming less of an option. All the delivery slots are taken, and we’re going to pay delivery fees to possibly find out that the store has none of the things we need, and then have to possibly wait days for a slot to open up at a different store. It’s a worry, I know many disabled people who have to use these apps presently have because they are unable to leave their houses, or don’t have the support system to do so.

 

Various cleaning products are day to day expenses for people living with certain health conditions. If you’re healthy, you probably don’t need 10 bottles

of hand sanitizer and 5 packs of cleaning wipes. Someone else in your community does, and they’re now unable to get them.

 

Right now, one of my biggest fears for my disabled friends is how they will manage with activities of daily living if attendant services become restricted or unavailable, either because attendants become ill or don’t feel safe providing personal care. Attendant services, for those who may not know, are essential for people living with physical disabilities to perform tasks such as getting out of bed, eating, bathing, taking medication, and running errands. Right now we don’t have any information about what will happen to disabled people who rely on attendant services if they have to isolate. What happens

if their attendant becomes unwell? What happens if the disabled person starts showing signs of the virus? Most countries already are in crisis, with few disabled people receiving the level of support they need. They are likely to be hit hard by this, having to choose between what supports are critical for survival and what things they can do without.  Ontario has not provided any extra information to people with disabilities about staying safe and developing an emergency plan if the people on whom they rely cannot come to work or become sick themselves.

So, what can we, as a community, do to collaborate and stay connected?

 

We can…

Check in on your neighbours–especially those who live with a disability or who are older adults. You can just drop ready-made food off, say a quick hi, and this will go a long way. 

If you cannot check in physically, do virtual check-ins. You can even have virtual coffee clusters with friends over Zoom to keep spirits up. 

Make sure your disabled friends have access to accurate information. Remember, very little of the info coming  at us is Audio Described or has captioning. If you know someone may not be able to read it, or needs it put in more simple language, check in on them and work with them so that they are kept up to date.

Continue connecting in community–as I said above, this is such a vital part of keeping social isolation at bay. We can do a lot online; we just have to get creative. A lot of agencies are seeking virtual volunteers to help with social media and keeping community members up-to-date. Maybe, you’re a good listener, and you want to volunteer for an online counselling platform. Where possible, have gatherings continue online–yes, you can still have that wine and cheese–it just might feel a little different when we’re all Zooming into the room virtual style rather than in-person. Watch movies with the girls over Zoom or Skype or your prefered online platform. Have an online book club–you can still have those great convos about the book. I’ve even seen churches going online to do their services; I attended one this morning from Windermere United, and it was fantastic! Many employers are encouraging work from home–if possible, do this and make a regular point of checking in with colleagues.

 

We Should not… 

Get your shopping delivered unless you have to. It’s vital that vulnerable populations can access these delivery services and if you’re able to go

to the store, please do.

 

We Should…

Only buy the supplies you need. I understand this is difficult because we don’t know if a lockdown will happen, but think sensibly. Plan how you’d cook

if it happens and ensure you have the basics, but there’s no need to buy every box of pasta you come across.

 

Share resources with others. Maybe you don’t have any toilet paper, but you do have 6 bags of rice. Perhaps you can swap supplies with a neighbour or friend

so you both have what you need.

 

But, most importantly, Be a friend, be compassionate and giving. Be kind. We can and will get through this, but we must work together in community.

 

Some great resources:

Citizens with Disabilities Ontario and the Covid Virus

https://mailchi.mp/3a778a545763/cwdo-ontario-news-march-17-3668809

Watch Kelly McGonigal’s TEDTalk on

http://eepurl.com/cVww-b

 

 

 

Conceptualizing the term  institutional ableism 

Recently, I gave a guest lecture to a group of first year students in a health policy class. One of the topics I covered was institutional ableism and the impact this form of oppression has on the disability community.

“What’s institutional ableism,” a student asked. I paused–there is the textbook definition, but then there are the myriad ways institutional ableism plays out daily in our lives. Reflecting on the student’s query, I write here not just the textbook definition of institutional ableism but how it is so present in so many lives.

Institutional Ableism is a set of practices, policies, structures or regulations that do not take into account the disabled experience. 

Examples of such policies can include:

Caps on number of homecare hours; cut-backs to receiving disability supports when living common-law; carceral practices that restrict how and when people with disabilities access community services.

This is what institutional ableism really looks like in the lives of people it impacts: 

It looks like an agency policy determining who provides care to you in your home and how many hours of care you are afforded.

It looks like a person with a disability having to choose what activities they can participate in because there are only so many hours of support provided.

It looks like policies impacting people with disabilities by and large created by people without disabilities.

It looks like there being very few leaders at all levels of government who live with a disability.

It looks like courses and curriculum in allied healthcare professions taught strictly by non-disabled people with no lived experience.

It looks like inaccessible health care providers, equipment and machines, or lack of affordable health care to half the population, who are below the poverty

line.

It looks like the assumption of competence afforded to non-disabled people.

It looks like two showers a week for disabled people being regarded as acceptable.

It looks like the assumption that disabled people can only ever live with other disabled people and the lack of affordable, accessible homes. 

It looks like the increasingly neoliberal approach to service delivery which results in austerity measures to ‘cut costs’ every day.

It looks like a person who won’t give a disabled person who is qualified a job because of the misconception that disabled people won’t be able to complete the tasks associated with the job. 

It looks like care being “streamlined” to fit within an economic framework.

It looks like a disabled woman being refused IVF on the basis that she probably couldn’t parent her child.

It looks like a job where you can legally get paid as little as $1.33 an hour.

It looks like a policy that doesn’t let a neurodivergent access a diagnosis under the public system.

It looks like mental health care which is more than a person’s monthly wage.

It looks like disadvantage in education, or education that is based on ‘participation’ and not learning.

It looks like a law that enables you to be locked up without charge forever because you are not deemed ‘fit to stand’.

It looks like all the girls in the institution getting the depo provera shot at the same time because there’s less mess to clean up.

It looks like a haunted asylum at a showgrounds where children are encouraged to scream when the ‘mental patients’ jump out at them.

It looks like charity and welfare advertising which depicts disability as tragedy and pain being screened on our televisions.

It looks like an inaccessible ballot booth in an inaccessible polling place.

It looks like standardized testing which is based on the ‘normal’ of non-disabled students.

It looks like mandatory sporting activities which exclude some children.

It looks like us being segregated and isolated and abused and excluded and systematically disallowed from being part of the rest of the country, the rest

of the world.

These are some of the things that institutional ableism looks like, but this is in no way an exhaustive list. I could keep writing for days, for weeks.

How small innovations and adaptations make a large difference for someone with a visual disability on TTC



Most often when we think of taking the TTC, we worry about delays, re-routs, and even anticipate a long, slow commute. Well, I’d like to share a different narrative–one where the TTC really considered accessibility and inclusion for all its users, no matter the ability. For anyone who commutes, you know that Yonge and Bloor Station can be a beehive of activity. People are coming and going every which way, and the trains are packed to full capacity. Yonge and Bloor, along with other stations in the downtown core, can be challenging for someone with no disability to navigate, but imagine for a moment if you had a visual disability.

 

One option, of course, would be to take the para transit system (Wheeltrans) that the city offers to accommodate those who cannot use conventional transit. Another option (the one I choose) is to find work arounds and take conventional transit. 

I have been amazed at the level of support provided by customer service representatives and ambassadors alike during the rush hour commute. When I exit the train at Yonge and Bloor Station, I am greeted daily by a friendly TTC customer service rep who introduces herself and asks me where I am trying to go. This representative ensures I navigate the crowd and get onto the incoming southbound train–there is even a page sent to the incoming train to inform the driver of the train I am coming and may require extra assistance. What I truly find remarkable is when I get to my destination, there has been an ambassador paged to meet me at the other end and assist me out of the station. 

Why am I telling you all this?  Well, for one, this service of providing representatives at major TTC stations is a true example of universal design (what is put in place to accommodate people with disabilities actually benefits us all). I am sure many folks benefit from having agents on hand to ask directions of or just clarify the best rout–so it is a win win. I cannot speak to how many travelers have found the customer service program useful, but for me, it has meant being able to feel included, supported, and safe on conventional transit. For more on Universal Design, see: http://universaldesign.ie/What-is-Universal-Design/The-7-Principles/#p1

 

 

 

 

Managing micro aggressions

Friends and strangers say lots of words to me, and I’ve noticed that one descriptor is “confident”. While the word in itself is not a problem, the assumption that I shouldn’t be as confident as I am because of living with a disability is, for me a problem. Of course, people don’t actually come out and say I shouldn’t be as confident as I am, but it is in the way they say it. “You’re so confident, considering…”

“You’re so confident, in spite of…” And then I’m reminded that as a person with a disability my confidence has parameters; it is only allowed to exist in protest of my differences, chin up and smiling.

Don’t get me wrong,  I do like the word “confident.” I also like the album by Demi Lovato and the song by Justin Bieber ft. Chance The Rapper. Sometimes, though, I hear it spoken in unfinished sentences. Other times, boldly finished. 

The question that follows, “How did you get to be so confident?” is where I feel like I have yet again experienced a micro aggression. A microaggression is an indirect, subtle, possibly unintentional discrimination against members of a marginalized group. Usually these take the form of statements, actions, incidents, or exclusions. 

The honest answer is that I did not *get* to be this way. I have ALWAYS been this way. I have thought about this so much because I’m asked it so often. Not having a satisfactory tale of trauma seems to blow people’s minds. I wonder sometimes if my greatest offense is being the kind of person who loves herself without having earned it by hurdling misfortune. 

This is what makes sense to us, this idea that people with visible differences struggle to love themselves and need an emotional breakthrough to shift their perspective. Some do, and that’s okay, and I’m glad when they get there. Others don’t, which should also be okay, but instead seems to be a perplexing concept to grasp. 

 

There is just this subtle, consistent, daily feedback telling me that confidence coming from minorities still catches people off guard, which is wrong for me and I want it to be wrong for you. It’s okay if it’s not yet, I get it. We’re supposed to think that women with disabilities are timid, self-conscious, asexual, and here to inspire you. I am none of those things! I am many things—an academic pursuing (or will be soon) her PHD; a Para triathlete; a lover of song and music; an advocate; an educator; a writer; and, so much more! 

 

 

The art of braille literacy in an increasingly technological world

January is celebrated as National Braille Month. As such, I wanted to take a moment to reflect on what Braille means to me, and how knowing the Braille code has enabled me to pursue education, participate in my community, and independently read and write.

 

Louis Braille was born on January 4 in 1809 and invented the alphabet that became the basis for the current system of dot combinations that enable blind people all over the world to read. He died tragically young, but his legacy has lived on for all of these years. In addition to Latin languages (English, French, etc.) there are braille systems for Japanese, Chinese, and Korean, as well as many other languages that enable blind children and adults to not only read and write for themselves but contribute to society at large.

 

As a child, I started to learn the print alphabet with my able-bodied peers, but in the second grade, a decrease in my vision prompted my parents and teachers to explore the possibility of me learning Braille. Let me just say here that I was not as enthusiastic as my parents and teachers to learn this new way of reading. I wanted to fit in with my classmates, and vehemently opposed Braille instruction. It wasn’t until one of my many eye operations robbed me of most of the sight, I had left that I started to really embrace Braille. This was around age 12, and for any Harry Potter fans out there, I used this series to get into reading. I recall vividly one Christmas when the 3^rd book came out. Of course, I wanted to know what happened to Harry and his crew, but the audio books in the series were not available until several months after the print books came out. I remember asking my parents to read the book, and what did they do?  Offer me the 3^rd book in Braille in the set as a Christmas gift; I guess you know what I did for the rest of that holiday.

So, why am I writing all this? As a child, I thought every other blind student learned to read and write braille in this way, but I have learned that many are not being taught braille at all, due to the prevalence of screen reading software. Many of those that are taught to read may not be taught to write braille, since typing on a computer is so commonplace. While audio feedback and learning have its place, I believe there is no substitute for learning proper spelling, grammar, and sentence structure, and for those with little or no usable vision, I believe braille is the only way to achieve this. In no way am I saying that everyone needs to be perfect at it, but even sighted learners using a tablet, or a smart phone have a visual concept of spaciall relation, grammatical correctness, and even spelling (with or without the aid of a spellchecker). I believe the lack of braille teaching (with hard copy paper or with an electronic braille display) will ultimately put blind children (and later adults) at a disadvantage, because it is extremely hard to learn basic language concepts without being able to “see” them. 

 

Without Braille, I would not be able to read the lyrics required to sing in my church and community choir. I would not be able to effectively and efficiently present at work and in my academic studies. I would not be able to pursue a doctorate with the same level of ease when writing and publishing. Most of all, I don’t think I’d be able to pursue my love of literacy without knowing Braille. 

 

 

 

 

A triumphant end to the 2019 triathlon season

As I sit down to write this blog post, it is both bitter and sweet. Bitter, because another triathlon season is coming to a close, but sweet, because this is my forth year doing triathlons with my guide David. This Labor Day weekend marked an exciting venture in our triathlon journey–we did a weekend trip to the Somersalt Triathlon in Ottawa, Ontario.

We decided to drive to Ottawa the day before the race rather than take the tandem and ride by train–a decision I think we may re-consider next time. So, off we set on Friday morning into a clear sunny day–CBC radio playing all the way along–yes, we actually listened to 5 straight hours of CBC radio.

One of the highlights of the drive was the opportunity to stop at the Big Apple. For those who don’t know it, it is a centre just before Kingston with everything Apple–from cider to candy to apple flavoured pork to pies to jams. We picked up a gift for our hosts and sampled some of the ciders on display. The grounds included a petting zoo and a couch for pictures that said “cow’ch.”

We arrived into Ottawa and went directly to the race site to pick up our kits and receive our orientation; there were several events going on at the same time as our Olympic triathlon, so understanding the course was important. There, we met another disabled triathlete. Cathy and her guide Peter were there for Cathy’s first duathlon–an Olympic swim and bike. Cathy and I talked about our experiences and became fast friends.

Then, David and I went to our hosts’ home where we were greeted with warmth, coffee, and conversation. I’d actually never met Pat and Mark before, but one of my close friends in Toronto was kind enough to reach out to her parents when I needed a place to stay, and there I was. The evening was spent getting to know one another, eating Pat’s wonderful baking, and listening to, of course, CBC.

The next morning was the race which dawned clear, cold, and sunny. David and I packed the car with tandem, wet suit, and snacks and set off. We got to the race and met Cathy and Peter again and set up our transition area. Great, we’re good to go–nope! Not quite! Our bike seat broke! Oh No! David needs a seat! Now David is many things, including a great jury-rig expert. So, off he went to find a bike part, mechanic, and some courage! Well, he came back with a fixed bike in hand, and we got into wet suits for the swim.

We walked down the beach to the Mooney’s bay beach where the race started and to receive instructions on where to swim. There was about 85 of us gathered to swim, so there was only one wave. The horn went, and we were off! Under a periwinkle sky, the black lake stretching out before us, we gave it our all.

Then, the bike–it worked. We had to do 4 10 K loops to complete our 40 K segment. I swore, by the third loop, I knew the course so well even I could drive that bike!

The run was fraught with others doing other distances but was largely along the beach where the smell of dogs, burgers, and snacks filled our nostrils–my belly was hungry by this point!

At one of the aid stations, the drink on offer was warm Coke. Now, I don’t think this is a drink I’d choose to have again!

When the race was over, we thanked the organizers and said our goodbyes and headed back to our hosts’ place to rest.

We stayed an extra day to tour the ByWard market and visit more with our hosts. We enjoyed a day of exploring, shopping, music, and friendship.

As I pack the wet suit away for another season, I reflect on how each race is special and different. You never know what to expect—whether that is a rain storm, broken seat, or unexpected friends you meet along the way. I am already planning my races for next year, so stay tuned. See you at the finish line!

 

 

Who defines what services are essential? Is it the end-users themselves?

Just think about this post!

https://www.lgbtqnation.com/2019/06/queer-disability-activist-andrew-gurza-says-march-dimes-caregiver-abused-home/

 

An ally and colleague was trying to prepare for an important day—he was asked to be present in a photo shoot. So, if this was you, what would you do?  Well, you’d likely get up, shower (we’ll come back to that), have a good, strong cup (or 3) of coffee, and breakfast. Then, you’d drive or take transit, or order your Rideshare to the event. You’d likely NOT encounter any barriers as you perform the daily occupations associated with your morning routine.

 

So, why then, do I see articles like the one I’ve shared on my news feed? Why does this conversation change because an individual has a physical disability? First, so many things wrong. To start, why is showering not an essential service? This speaks to the systemic ableism (yes, spellcheck actually told me that is not a word) that continues to exist in the caregiving profession. 

Why this continues to exist, I think in part, is that MOST of the professional programs (social work, occupational therapy, nursing, PSW, the list goes on) are instructed solely by able-bodied professionals, with no course or curriculum developed or taught by instructors with lived experience of disability. Now, you might be saying “but Chelsea, there are not faculty with disabilities QUALIFIED to teach in these programs.” That’s another conversation entirely, because I guarantee you that given the myriad barriers we, as students with disabilities face, individuals often don’t complete higher education. For a list of barriers, just ask me or any student with a disability that has obtained a degree.

But, back to Andrew…

The problem is that services are delivered on a convenience and staffing model, not on a basis of enriching quality of life. Andrew wanted to look his best for a photo shoot, and thus, asked for basic human decency—a shower. Stop and think about that. Will you shower before you go to work tomorrow? Yah, damn right you will, so why is this RIGHT denied someone because they have a physical limitation?

On a broader level, we need to look at providing support beyond simply activities of daily living and extend it to include assisting individuals with volunteering, employment, attending cultural events, attending activism-based protests, art, and the list goes on. Who is defining what are essential services? Think about ALL the rich array of activities you do in your daily life? Would you want ANY of those deemed UNESSENTIAL? Well, if the answer is that you would not, and I guarantee that you would not, then become an advocate, an ally, and have these unpleasant, uncomfortable, but needed conversations. Work to get topics of intersectionality, disability, gender, and activism into the mainstream conversation and curriculum. 

 

The world through your eyes

As a person living with vision loss, I have had to rely on sighted assistance for as long as I can recall. I consider myself to be fairly independent, however, there are tasks I still require  sighted assistance to complete, such as reading mail; navigating unfamiliar locations; determining types of products in my home; ordering  an Uber and telling me it is there;  and, formatting my resume (yes, they can actually do that).

What is Aira, you may ask?

According to their web site, Aira is “… transformative remote assistive technology that connects the blind with a network of certified agents via wearable smart glasses and an augmented reality dashboard that allows agents to see what the blind person sees in real time.” A blind person – “explorer” – uses their smart phone to connect with an Aira agent, who can provide visual information based on the view from the phone’s camera or smart glasses worn by the Explorer. Agents are trained to provide unbiased information – no editorializing here – on everything from the application of makeup to the items on a restaurant menu to the cycle of a stoplight. Depending on the equipment setup of the Explorer, agents can also take photos, remote in to computers and cell phones, and provide technical assistance. The possibilities are numerous.

 

Using Aira

 

For a long time, I knew about Aira but did not take the leap. I think what made me take the leap into the Airasphere was a friend and colleague who told me how it would open up my eyes and my world. I took hers for a test drive, and she is right! 

I can honestly say the first time I used Aira, I cried. I have been blind since birth and really never understood how much of the visual world I miss out on. The first time my Aira agent, Emma, described the lay-out at Starbucks, right down to how to navigate the line and the expression on the server’s face, I was overwhelmed, both with amazement and gratitude. 

I feel such a sense of independence and dignity with Aira. I was out for lunch with a girlfriend and I had to use the ladies room. In the past, I’d have to ask my friend to guide me there and wait—this always made me feel as though I was two years old needing to be “taken” somewhere. Well, now with Aira, I have that autonomy and freedom. I connected to my Aira agent, Jenny, and she asked me to scan to my right and left. The signs for the ladies room weren’t evident, so we did some exploring. I told my friend that it may take me a bit to navigate, as I’m still new to the app, but not to be concerned. What is great is Aira has a “privacy” mode that I can enable when I am actually in a washroom or other space that is private—this blacks out the agent’s screen so they cannot see what is happening until I turn off the privacy feature. I did make it back to my friend safely and my agent, Jenny, wished us both a good lunch.

 

I have ordered the Horizon glasses and have not yet received them; I have had some challenges with reaching customer service which I understand to be a common complaint. Other than that, I know this service will really open up my world and will do this even more once I have the glasses and remote data stick.