Welcome back to my disability Q&A series where I interview people from around the world about their disabilities, and how they cope in daily life and overcome any struggles they may face.

Today’s interview is brought to you by Meagan, I stumbled across her Twitter page, a while ago, noticed she had a blog also, and got absorbed reading it she too blogs about visual impairment, disabilities and challenging stereotypes. So I thought who better to ask to join my campaign?

Now I hand you over to Meagan…
.

tell me about yourself?

My name is Meagan Houle, and I hail from the Great White North
(Alberta, more specifically). I’m a soon-to-be graduate of MacEwan
University, working on a Professional Communications degree. I’m
finally 21, so can now raise a glass anywhere I’d like! It’s terribly
exciting.
What hobbies do you have?
Language is one of my greatest loves, so I’m always reading, editing,
reviewing, or writing. Crowds don’t scare me, so I like to get up in
front of them and either speak or sing. Research is another great
love, so I’m always chasing some elusive answer or other.
Now we know the basics, can we learn a bit more about you?

What is the medical reason you have a disability?
My eye condition is Leber’s Congenital amaurosis, but its friends call
it LCA. It’s a rare genetic disorder that affects patients in varied
ways. Some may be completely blind, while others, like me, have light
and colour perception. The particular form I have is literally one in
a million, so I get to be special in at least one way. You might say I
won the genetic lottery.
Have you had your Visual impairment / disability from birth?
Yes. What little vision I was born with is declining now, but I’ve
always been visually impaired.

Which terminology do you prefer: Partially Sighted, Visually Impaired, Sight
Impaired, Severely Sight Impaired or Blind?I tend to favour “blind” because it’s such an easy, uncomplicated
catch-all, and because I’m not sensitive about perfect accuracy. If
we’re being technical, though, “visually impaired” suits me best as I
do have a tiny amount of vision, though not enough to give me any real
perks! (Thanks, universe.)
Do you have a cane, Guide Dog or neither?
Oh, I’m a lover of the long white stick, for the moment at least.
If you could extinguish your disability, would you? – If not, please explain
why.
It’s a complex issue, but the short answer is, maybe. If there was a
medically low-risk cure available I might consider it, but only if
rehabilitation services were being offered afterword. I can’t imagine
suddenly being able to see with no one to help me process the new
information my brain was receiving. I’m not exactly happy to be
disabled, but I’ve grown used to living this way and the thought of
such a foundation-shattering change makes me shiver a little. For me,
it’s not a matter of snapping my fingers and making my problems go
away; it’s far more nuanced than that.
For those who do not know much about your VI what can you see?
I can’t properly answer this question, because I have no idea what
seeing normally would be like. I have no frame of reference. I can
tell you that I can see light and colour, though my colour perception
is fading as LCA continues to limit my peripheral vision. I can’t do
any of the useful stuff, though. I like to joke that I’m functionally
blind, for the most part. I can’t read print or recognize faces or
drive. I read braille, and use screen readers, and travel with a cane.
How has your disability effected you?
*Socially
It’s tough to say how exactly blindness has affected me socially,
because I’ve never been any other way. I will say that, within the
bounds of my family, it made very little difference. Certainly, my
cousins and sister had to slow down a little when playing tag or
hide-and-seek, but generally I felt like one of them in the ways that
mattered. School was a different story. I was lucky for the most part:
I wasn’t usually bullied, and when I was, it often involved some kid
running around me in circles chanting “You’re blind!” over and over.
(Really? I had no idea!) I was, however, ignored by almost everyone,
even the nice kids. I eventually made a few cherished friends, and I
graduated with a healthy social life.
Dating was harder, not least because I was introverted and shy. I
couldn’t exactly fall for someone I’d hardly spoken to because looks
were mostly irrelevant. I also found it difficult to exchange those
loaded glances you’re supposed to send across the room to the
potential new love interest. I met my fiance online (though not on a
dating site), so I haven’t dated in several years.
Now, I don’t find it much of a challenge to make friends and
socialize. It takes people some time to warm up to me, but once I
prove to be fairly normal, I find it simple enough to join groups for
work and school. While I do have a large group of blind friends and
acquaintances, I get along equally well with sighted people.
*physically
LCA is believed to be capable of causing all manner of delightful
things, like organ damage unrelated to the eyes, but so far I’ve been
spared. Blindness itself is not an overly physical disability, in that
you can still move uninhibited for the most part. With blindness, it’s
the external environment that’s more worrisome. I’ve sustained more
than a few minor and moderate injuries courtesy of a post I couldn’t
see or a wall I forgot about entirely. I actually gave myself a minor
concussion once via a support pole while playing a spirited game of
tag. I did forget which grade I was in and the names of my cats, but
what’s a knock on the head here and there for a life of carefree play,
right?

*Mentally
This can tie into the social aspects, I think, so it’s a hard question
to answer on its own. One of the most important parts of a human’s
general development is their relationship to the outside world, and
since I grew up in a rural community packed with sighted people, I had
no geographically close friends who understood me or my particular
struggles. The internet, when it finally came along, broadened my
horizons enormously, but as a child and young teenager, parts of my
life were quite distinct from those around me and I had no idea if I
was doing everything right. Any exclusionary trait is going to
interfere with mental development, so I doubt I could even begin to
quantify the ways blindness shaped mine. I was sometimes put in
separate classes, though not often as I went to public school. I was
excluded from many activities, and placed in groups with people who
had cognitive disabilities (the reasoning being that disabled people
should all be lumped in together, even when they have nothing in
common at all). I really think my small but loyal group of sighted
friends saved my sanity while I was growing up.
Now, I’m reasonably well-adjusted, so I doubt blindness is quite as
problematic for me mentally as it used to be.

Do you think your disability has made you who you are today?
I imagine it’s impossible to have a disability like blindness and
remain entirely unaffected by it. My identity is made up of so many
components of my life, and blindness is an undeniably important part
of that. Maybe I’d be more inclined toward sports if I could see,
though there are many blind athletes, so that’s unlikely. Maybe I’d be
more interested in fashion, though again, there are many
fashion-conscious blind people, so that seems unlikely, too. Maybe I
wouldn’t be as introverted or bookish; maybe I wouldn’t be as
interested in music; maybe I wouldn’t be as passionate about diversity
and social justice. Still, introversion, musicianship, and a passion
for social justice are fairly common, so I’m not convinced blindness
has made me who I am, from the ground up. It would be naive to claim
it hasn’t shaped me at all, though. Blindness has a habit of
encouraging certain traits while minimizing others. Music an books are
blind-friendly, so it’s natural that I would gravitate toward them. It
makes sense that I’d be passionate about diversity, as I’m a diverse
individual by default.
If I had to cite one positive, disability-related aspect of my
identity, I suppose it would have to be a certain empathy toward any
and all struggles, whether I understand them or not. I’m quicker to
get involved on behalf of someone else, and much more likely to
consider a new discrimination case carefully before making judgements
about how it might be dealt with. Disability has, in short, reminded
me on a regular basis that life is unfair. It has made me want to make
it a little fairer.

Is there a particular question you get asked often because of your
disability? If so, please explain below.
There are too many to name! I suppose I’m most often asked how I
manage living with blindness. I don’t have a satisfactory answer to
this, so I just tell people that necessity is very persuasive. If
you’re given a burden and told you must either bear it or not exist at
all, it’s not a hard choice to make. This doesn’t mean I don’t
struggle, and this doesn’t mean I necessarily enjoy being disabled,
but it does mean that I’m forced to handle it, so I do. Most days,
it’s not even on my mind much. >
What are the positives of having a disability?
I’d say the positive I most value is that I get to see the best of
people. I definitely get to see the worst of people, too, when they
discriminate against me or tell me I’m just a drag on resources and
ought to go home to my mother. I get to meet people while they’re
offering an providing assistance, asking how they can get involved in
associated causes, and generally trying to understand me. So many
strangers have crossed my path because they wanted to know how they
could improve the lives of others. It’s a privilege to interact with
so many who seek education and champion diversity for all people, not
just themselves. These are the type of people who make great lifelong
friends.
What are the negatives of having a disability?
There are a few too many to discuss properly here. The obvious ones
are social exclusion, chronic unemployment, accessibility barriers,
gaps in understanding, lowered educational an professional standards,
bullying and bigotry, etc. Even the most successful, functional
disabled people can’t escape at least a few of these. You just learn
how to deal with them. We have all the same issues as every other
humans; we just have a few extra ones, too.

What would you say is a difficulty for you being VI / disabled?
At the moment, my most immediate difficulty is finding gainful
employment. I’m on the job hunt, and I’m routinely bumping up against
barriers that wouldn’t exist for a sighted person with my
qualifications and skills. I’ll be looking at the ideal job,
daydreaming about the interview, only to find a few duties associated
with video editing or some other skill I just can’t learn to a high
enough standard. Then there’s the issue of disclosure: I no longer
disclose blindness on application forms, because it’s the quickest way
to guarantee that my resume will end up in the recycling bin and my
calls will go unreturned. More than once, a hiring manager has become
excited about me as a candidate, only to go silent when they realize
I’m blind. Suddenly, the position has been filled, or they no longer
need anyone at all. So, interviews are stressful because I’m
anticipating their reactions to me. I know I’ll be defending the
qualifications a sighted person would simply be assumed to have. When
sighted people point to their degree, it’s assumed they can do the job
until they prove otherwise. For me, it’s the opposite: I find myself
defending my degree, because it’s assumed I’m incompetent until I
prove otherwise. It’s highly discouraging.
As a person with a disability, what are the things you face on a daily /
weekly basis that frustrate you?
*In your home
Unless I’m very careful about organization, it’s easy to lose things,
even if I’ve only just put them down. I can spend ten minutes
searching my tiny apartment for my keys or cell phone. (Of course, I
can put this down to being a wee bit scatterbrained, as well.) Then
there are general accessibility issues, like labels I can’t read,
though I have developed labeling systems to get around that. The home
is the least frustrating environment because it’s the only one I can
control.

*outside your home
The most frustrating obstacles outside the home are usually outdoors.
While I can learn a route and travel with reasonable safety and
precision, any unexpected obstacles can really throw me off. (This is
partially because I have a cane, but it can hinder guide dog
travelers, too.)Construction zones, illegally-parked vehicles, and
snowbanks are just a few of the objects that can knock me off course
if I’m not especially familiar with the area I’m navigating. Of
course, outside the home, people are free to move objects around with
impunity. So, even if I’m organized, as soon as someone moves my
belongings around, it’s going to slow me down. This happens especially
in school and workplaces, where a huge volume of people come and go,
often touching and manipulating things I will later need to use. This
is why we can be so fussy about our own possessions, and why we hate
it when others move them.
Are there any tips or tricks you use in daily life you’d like to pass on to
another VI/ disabled person?
I don’t have a ton of handy tips and tricks that aren’t either common
knowledge or stolen from those wiser than I am. I think the single
most useful thing I can think of is the value of labels. Label
everything, even if you think you can probably remember where you’ve
put a thing. That way, if someone else comes in and shifts your stuff,
you’re not facing hours of fiddling. If you can afford one, get
yourself a Pen Friend. The thing is an ingenious piece of tech that I
use all the time.

Do you use Assisstive technology in your daily living?
All the time! Assistive tech is how I get through my life with any
degree of efficiency, especially at work and school. I use, among
other things, a screen reader, an electronic labeler, (pen friend),
multiple image recognition apps, a scanner, and my beloved Packmate
braille display (yes, I still live in the Middle Ages, sue me).

What piece of advice would you give to someone newly diagnosed? Or going
through a deterioration in vision / or mobility?
I don’t know what it would be like to lose or be about to lose your
sight, since I’ve never really had much of it myself. All I would say
is that it’s so important to reach out to others going through the
same things. The internet is full of support groups for every
imaginable struggle, and if you can’t find one, start one. I know it’s
cliched, but you’re never alone.
Any advice you’d like to give to a person with sight / no disabilities?
Assume we’re normal until told otherwise. Obviously there are some
differences, but I think you’ll find they matter far less than you
might imagine.
Did you seek out any specialist services / charities to help you and your
family deal with your situation?
I was diagnosed in infancy, so my parents sought out the CNIB to
provide some support. As I got older, I usually handled struggles
without tailored help, though the CNIB continued to provide occasional
guidance as I grew. Today, I’m almost entirely independent of
designated charities and the like, but I do know when to ask for
help–something it took me a long time to learn.

Where can people find you out in the world?
🙂
When I’m not being featured on the excellent blogs of others, I can be
found on my own blog (wheresyourdog.wordpress.com) where I write about
advocacy, education, and diversity, among other things. There’s even a
post about how horrible mosquitoes are; it’s definitely a riot. You
can follow me on twitter (@MeaganHHoule), where I share things that
make me laugh, cry, and think. You can also witness my addiction to
literature on Goodreads
(https://www.goodreads.com/user/show/27630033-meagan-houle). Add me so
I can fall in love with the same books you do!

Anything you’d like to add my lovely?

Thank you so much for taking the time to read about me and my dubious wisdom.
If you take nothing else away from what I’ve said today, just remember
to follow this blogger’s example and ask lots of questions (after
checking that they’re nice, polite questions, that is). We all need to
know how much we don’t know. Knowing how much you don’t know is half
the battle…or something. Now, get out there and (respectfully)
pester some folks!




Thank you Meagan for your fabulous answers! Not only did I see yet another great prespective of how you live your life as a person with a disability, but you embraced it with such humour and pazazz! I love your writing style, it’s unique and amusing; certainly puts my ramblings to shame! 🙂

Please don’t forget to follow her links, and why not share the love? Leave her a comment, we would both appreciate it!

If you or anyone you know would like to take part in my Campaign, do not hesitate to contact me on the following:
Email:SassysWorld6@gmail.com
Twitter
Facebook

If you enjoyed this interview why not check out the others in the series so far?
Interview 1
Interview 2
Interview 3

You are most welcome to subscribe to my mailing list so you do not miss any future interviews. For that I would be most grateful! 🙂

Thank you once again Meagan, it was lovely to interview and find out more about you as a person!




I hope you enjoyed this interview as much as I did?

Until next time wonderful people!

Much love, Sassy x

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