Shockingly Curative

Photo of a younger, maybe seven year old me holding a microphone.

Last week I was taking a look through twitter on my lunch break, and came across something that got me talking.


Well, he shouldn’t have to explain how wrong this idea is in 2019, but it turns out that’s exactly what we we did. We’re all entitled to our opinions, I suppose, and I probably have a particularly strict stance on this seeing as how I live so close to JRC with all its controversy.
The discussion got me thinking though, and not just about how wrong this “cure” would be, but about “cures” in general. See to me, the word’s a bit strong; a bit… final. I’ve heard about “curing” blindness, “cures” for types of dwarfism and of course, “cures for Autism.” I’ve also heard about “curing” cancer, or diabetes.
Google defines the word “cure” as, “Relieving a person or animal of symptoms of a disease or condition.” So, to “cure” ADHD, autism, blindness, or dwarfism would be to erase characteristics of ourselves that are brought about by our subsequent diagnoses. For many, like myself, these “conditions”, more commonly in our case called “disabilities”, are part of who we are. Personally, I don’t want to be “cured” of these things that have played such a key part in my life. Should there be treatments to help us live better, see better, learn better, live better? Absolutely, but does that mean we need to be “cured?” I think not.
Rather, I think those who develop “cures” need to be focusing on the diseases that kill people. Cancer, Diabetes, diseases which greatly limit a persons’ lifespan, or endanger their lives. These are what I want “cured.” Not my blindness, or dwarfism, Autism or ADHD. Let people choose what they want treated. Let’s not start running around “curing” children before they can decide weather or not they want treatment. To “cure” one disability is the segue into “curing” them all, and that will only lead to a world which has taken ten steps back in acceptance and diversity. That is not where the world should be focusing its energy, nor is shocking behavior disorders out of young kids.

Just Who’s In the Dark?

My mother and I with a dog

Nope, this is not my guide dog; I don’t have one of those, for reasons that are a whole different post. That is a therapy dog though, also not mine, and that is my mom. Anyway, this is not a post about dogs but a post about a new TV show hitting the scene featuring a blind girl with a guide dog. The show, “In the Dark” aired its first pilot episode on the CW Thursday night, and it’s making some people mad.

In the Dark trailer

Check out this trailer. Love it? Hate it? The main character Murphy (who has the first name Murphy?) is not played by a blind person, which is the the main reason for all the uproar. The preview shows her feeling someone’s face, using her cane badly, getting trashed and having multiple sexual encounters. Basically, it shows the kind of blind person no blind person aspires to be. However, it also shows that blind people, like anyone else, have their own set of issues and for god sake are not, contrary to popular belief, nonsexual beings.

In the actual episode we see more of these facts to be true. In fact, she does explain that feeling faces is not what we do, and talks a lot about how sighted people talk to and pity those of us who are blind. Maybe the CW didn’t consult ACB or NFB, but clearly someone somewhere knows a blind person, because they’re getting more than a few things right. Now, let’s leave her be and watch as she kicks ass sleuthing to solve her dead friend’s murder.

Let’s be honest, people would be divided no matter how the CW decided to swing this show. If they cast a blind person for the lead, people would still be mad over the way the character is written. If they wrote the perfect blind character with the best behavior and no blindisms, well, who would really watch that? How dull. At least this will get people talking and create conversation around what is and isn’t reality in a blind person’s life.

The bottom line: go make some popcorn, tune your dvr to Thursdays at 9:00 on the cw, sit your booty down and watch this show. You know you want a killer plot line with interesting characters and forty-two minutes of intrigue. There’s no sense in boycotting it when your boycotting is giving it the traction you didn’t want it to have in the first place.

Have a thought, a comment, an opinion? I always welcome respectful discussion and would love readers’ takes.

World Awesome, Er Autism Day

My friend and I standing outside

No, I’m not wearing blue, or lighting things blue, or giving a damn about the color blue with autism speaks. Number one, they don’t truly support the people they claim to serve and number two, I wouldn’t be able to identify the color blue if I tripped over it. I will however fully support this autism acceptance, or awareness month, whichever you choose. Actually, I’ll just make this simple, take the second syllable out of autism and call it awesome month, because you’re all awesome.
Some people associate autism with inappropriate behaviors, difficulty in social situations, learning challenges, and limited vocabulary. They see someone stimming or enjoying their special interest and think the person lesser for it. Me, I think “cool. Let’s go hang out with them.”
Some of my best and closest friends have been you guys on the spectrum. Some of my greatest moments have consisted of enjoying your interest, learning your made up words or jumping around with you just so I can take a step into your world and see why that stim in particular is so satisfying. Personally, I really do like to spin.
Your honesty is unparalleled, although sometimes it gets you in trouble, and I’m pretty sure I’ve had deeper, more philosophical conversations with you than a person without autism. Seriously, I love the creativity and unique insight you all bring to the table. More people should think so deeply.
Yeah, sometimes I get a little sensory overloaded too, or focus on something for too long, end up repeating one phrase in my head, or don’t know how to handle a social situation. However, I’m just someone on the outside looking in, taking a stroll through the autism multiverse and appreciating the many facets of it. I don’t know life with autism any more than a person on the spectrum knows life as a little person, but I do know awareness and acceptance and fully believe this world needs a lot more of both.
To my awesome readers, I mean readers with autism, keep being your fantastic quirky selves and show the world you rock it. I’d love to hear your thoughts about this month, whatever you choose to call it. For everyone else out here reading, I strongly encourage you to find other blogs by writers with autism so you might acquaint yourselves with the real truths and misconceptions of the autism spectrum and meet some great writers along the way. Let’s raise awareness, build acceptance, ask questions and learn from others throughout this month. Remember that comments are moderated and therefore won’t be posted if not respectful.

Ableds Are Weird?

A younger me with a middle-aged guy

Social media is generally your best friend or your worst nightmare. It brings people together but also thickens those dividing lines that set one another apart. For me, it’s a way to network and keep up to date with current events. Sometimes, it’s the place where I get my hands dirty by digging in deep and the sight of a new controversy, the way I did yesterday.

Trending hashtags on twitter don’t usually grab my attention, but the fact that it was being used by a friend who doesn’t normally get himself caught up in these things did. Hashtag AbledsAreWeird appears to be taking off in the twitterverse, going so far as to be picked up by high profile news outlets such as NPR. It’s advertised as an avenue for people with disabilities to detail their strange, awkward, insulting or terrifying encounters with able-bodied, non-disabled individuals. Jumping out of our screens with a provocative, attention-getting line, the hashtag has done its job of chronicling these moments for the world to see, but is this really how we want the world to see them?

A phone screenshot of the most recent additions to #AbledsAreWeird.

Let’s dissect this for a second. First of all, the writer in me is screaming in revulsion at the term “ableds.” Really guys, this isn’t a word, doesn’t sound like a word, and shouldn’t be a word. Moving away from my overstimulated grammar brain, ableds are weird? Okay, but are they all bad? Your parents, your co-workers, PCAs and volunteers, they’re “ableds.” and you’re lumping them into the general population indiscriminately. While we’re on that wavelength, it’s going to be hard to get a new volunteer or PCA if the “abled” population is sitting on their phones reading about how they have each wronged some disabled person or another some way somehow.

If we’re going to talk openly about the all too common odd experiences with random strangers, we should at least use this moment to positively influence and educate the wider world. This way, people will learn, understand and empathize rather than sympathize. “ableds” would probably take kinder to such a discussion if they weren’t being called out, trash-talked and labeled as weirdos for doing what they think was good.

The first thing that drew me to this hashtag was my typically quiet friend trying to reinvent the wheel with a more positive, less aggressive spin on the original idea. The second find was this article, written by another person objecting not to the sharing of our stories but to the negative impact this hashtag can have on the bigger picture of inclusion and equality. He would rather use his experiences to #HelpFixTheView than spread slander and animosity by shouting #AbledsAreWeird from the roof tops. Now that I can agree with.

People with disabilities face discrimination and ignorance on a constant basis, but that can only change if we help fix the view. The current hashtag may be helping us take one step forward but also forces us to take two steps back. How about we take three steps forward by not being stereotypically ungrateful jerks and using those moments to #helpFixTheView.

Stars Align

It’s another Thursday at work, coming straight home to a quiet house afterwords, but it’s also valentines day, and I’m celebrating. I’m not getting chocolate, or flowers, or a fancy dinner, and that’s okay; it’s all material and money spent. Besides, I’ve got something better.

I’ve got someone to love, and be loved by. Someone to share thoughts and interests and moments with. These are the things I value above anything that can be bought, after all, everyone knows money can’t buy us love.

We’re hundreds of miles apart, 2090 from one house to another in fact. We’ve never truly met, and neither of us can see the other, but love knows no limits. Tonight we celebrate by taking the evening as ours, with music, conversation, and maybe a bit more, ending in staying together as we sleep until we wake up in the morning. It’s my perfect kind of night.

People often look skeptically at long distance relationships, especially those ignited online without in person experience together,. The doubt is understandable, but the successes do exist. There are ways to make things special, ways to spend time together, ways to keep up communication and of course, ways to spice things up. Ultimately, there are ways to make anything work if both of you want to give it a try.

I decided to give us a try about a year ago, but it’s this year I’m really feeling the drive to celebrate a day that I usually regard as silly and over marketed. One year can make or break a relationship, but it has only made us stronger. So, I celebrate to reflect on what I have and look forward to what’s to come. The future might be filled with challenges, but we can face them head on.

To all the singles reading, well, you probably aren’t because this bugs. I get it, and I’m not going to feed you BS about how love will find you blah blah blah. You’re awesome for sticking with my romance post, and you should celebrate your awesomeness if nothing else. I promise I’m almost done being sappy, but not quite done.

Happy valentines day to my amazing boyfriend Michael, who gave me the inspiration for this post and a reason to feel the impact of the day. Here’s to many more moments, and nights, and years.

Do We Still Need Braille?

My mother and I sitting with a braille notetaker between us.

It’s a question that’s been debated more and more as the years go by. Each January is Braille literacy month, and each year I hear arguments advocating its decline. Each time, I shake my head and ask myself again how people can be so… Pardon me, Blind!

Technology has risen to the forefront of everyday life around the world, putting screen reading and voice dictation capabilities in to devices no bigger than the palm of ones hand. It’s fantastic and all, but nothing compares to the value of the written word. Spelling and punctuation are mostly lost in translation when I hear information being read to me via computer or otherwise. It’s practically impossible to keep information straight without typing notes and rereading text, so imagine studying for a test when all you can do is listen and re-listen to the teacher or your book?
If you think you’d get by in a world of audio only, try and picture this. Your in a math class, and the teacher writes on the board:
(2+2)(3+3)^4*5
These types of equations are all over any algebra book, but would be virtually impossible to work out without being easily able to look back at the numbers and punctuation. Although one could slowly move through it and hear each symbol individually, it’s a lot to keep track of when hearing it piece by piece and a lot more complicated to solve without seeing it as a whole problem.

Image of me standing holding my phone, displaying a webpage containing a local train schedule.

 

If that’s not convincing enough, try reading a table such as the one above with audio only. While there are of course techniques and tricks to make this doable, graphs, tables and other data heavy documents are just so much easier to understand when laid out in front of you. No one wants to have to memorize and picture what’s where, and really, no one can do that all the time.

Personally, I still use Braille all the time. I label folders in my desk, and boxes in the kitchen. It helps me proofread these posts and other writings I am part of at work. Braille even allows me to type on my phone, with the help of a built-in braille keyboard. For others, braille signs help find room numbers, and can be a vital communication method for people who are deaf-blind.

Audio could never replace print, so why should it replace braille? In a world in which words are still an important part of day to day life, blind children around the world would be at a huge disadvantage without the advancement of braille in their lives. This method of writing may be over 200 years old, but it is the best language developed to put reading and writing in the hands of blind people worldwide. WE are smarter, faster and better for it, so let’s take away this notion that braille can be eliminated and bring literacy back to the students of the future.

Game On

SuperBowl stadium at field levelNo, I’m not one for sporting events, but when your home team hits big time, all the hype can make even the most uninterested local care. With my weekend being as action packed as it was, I was pretty adamant that if I watched the Patriots in Super Bowl 53, I was going to do it from my cozy room, comfy bed, and computer. So, somewhere around six I fired up a live stream and all the software I need to record and broadcast the audio to other interested listeners.
This year, the event was especially interesting with the addition of Aira. For those who don’t know, Aira is a service which uses smart glasses or a smart phone to pair a blind person with a live agent for realtime descriptions of our surroundings. Sometimes, the staff at Aira cover live events like this one without the need of a subscription and it was that which I tuned into for this. By tuning into the Aira coverage and the TV broadcast, I was able to keep track of the game action and appreciate the visuals of the halftime show as well as the postgame wrap-up. Although for legal reasons the Aira agents could not describe the game play for play, the commentary was sufficient and the descriptions they did give were more than I’ve ever had in previous years.
Want to hear my Super Bowl experience for yourself? This includes game highlights and Aira descriptions of halftime and postgame shows.

Think you might want to try aira? I’m glad to refer you. Just let me know you used my link and we’ll both get perks.

Also, as always, I welcome your comments and feedback. Please excuse the website clutter as I’m currently working on rebuilding the page.

On This Day: a Dedication

On January 18, 2018, I made a decision. Not a tiny simple one like what to have for dinner. One of those big decisions you make and hope you’re doing the right thing, only to find it was one of the best choices in your life. It was no secret that he wanted to try a relationship with me, but the distance and complex circumstances of both our situations made me uncertain. Yet, something on that night spurred me on to say yes.

In the months that followed, we learned and grew with each other. Sometimes there were bumps in the road that seemed impassable, but together we came out on top every time. We figured out each others habits, talked out every issue, discovered mutual interests and created a life that has become uniquely ours along the course of 12 months.

365 days later we are stronger than ever. We have found things to do together, and even projects we can both participate on. No distance, doubt, or conflict can get in our way as we continue expanding on the deep bond of love we’ve worked so hard to build. A year doesn’t always guarantee this much success even with an offline relationship, so the fact that we’ve come so far in such time speaks volumes about what’s to come.

Today I’m celebrating this one year anniversary, because our strength and love is something worth recognizing. I believe there is more years to come, more to discover, more memories to make and always more love to feel. This day, this post, and this celebration is dedicated to my love, Michael, and to all the future anniversaries I know we’ll be having.

 

Dwarfism Awareness Q&A

Self-portrait The fact that I have two disabilities means I walk the line between two communities. Often people in one don’t know how the other integrates into my life. So, with October being dwarfism awareness day, I thought I’d pose a Q and A session to facebook and see what people want to know.

How tall are you?

I am 3’8. My arms and legs are shorter than a person my age, but my body is typical for a 25 year old woman. There are over 200 types of dwarfism, which is a medical term for people under 4’10. My form is yet to be found.

Does being a little person effect your daily routine?

Yes and no. It does in the sense that I am always acutely aware of where things are and making sure they’re within my reach. I also spend a fair bit of energy climbing on and off chairs, into cars, etc. Lastly, us short people don’t walk as fast as others, so I have to take that into account when I navigate.

What is the most challenging thing about being blind and having dwarfism?

This made me think hard. Each comes with its challenges, but not much can be attributed to both blindness and dwarfism equally.
Both disabilities make finding things challenging. If I can’t reach something, I basically can’t see it. If I can’t reach it, I can’t climb for it, and even if I did, I still may not find what I’m looking for.

Is it difficult to find clothes in your size for your age?

With a friend at prom, wearing a prom dress. The fact that my body is that of an average woman makes finding clothing a lot easier. Pants, shirts, sweaters etc can all be hemmed to my arm and leg length. 3/4 length sleeves and warm weather things work great. No modification needed. Shoes are harder because my foot size is small and I’d rather not wear bright, sparkle patterned kid footwear.

If you were to build a house, would you want it modified for you?

For the most part, no. I am the type who likes to have people over, and most of the people would most likely be average height. I shouldn’t have guests sit low to the ground or bend over to access amenities of my house when I’m capable of adapting to an average height world. My only exceptions might be a side-by-side fridge freezer combo, and a stove which raises and lowers (yes, they have those.) Also, an elevator would be sweet!

Do you wish you were taller?

Sometimes I wouldn’t mind an extra couple inches, just to minimize the climbing. I don’t wish to be average height, and I don’t want those added inches enough to do something about it.

Did or do you get picked on because of your height?

Not really. I get a lot of curious kids who don’t always understand what they’re saying when they say things. Once in a while I get comments from someone just being rude, and to those I reply with a wave of the middle finger. I always had a lot of friends in school who I think fended off most the grade school cruelty.
Have a question of your own? Find me on social media via the social links menu or toss it in the comments.

Living, Loving, Learning: Leilani’s Letter

What is it like to grow up with two moms and a brother? I never had
two parents nor did I have siblings, but in a way, I guess I did.
Afterall, my earliest memories mostly consist of you, aunt Leilani,
and my cousin, Austin. I remember trecking through the airport heading
to see grandpa, my mother snapping pictures on an old 90s camera that
actually used film rather than creating digital files. I’d ride with
you guys in the backseat of the car, music blasting while my mom
tirelessly gave you directions as you navigated the chaos of
massachusetts roads. We’d grab a booth in a restaurant and eat dinner.
That, or go shopping, which for us kids at four or five years old,
meant playing in the toy section and eating all the food samples that
you and mom could find as you pushed us in those carriages which have
seats for us children.
Even then I loved words, and you loved to read them too me. You’d sit
and read to me until I fell asleep, and then keep reading into my
dreams. We’d read books far above the grade level stuff they made me
read in first grade, and it wasn’t long until I started coming to your
for spelling or definitions of words. Writing this tonight, I realize
that I owe my writing abilities to your ability to nurture a love of
English in my young child self.
When I was seven, you moved away and got married. I flew to meet my
new uncle Michael and sing at your wedding. That summer, I took my
first plane ride without my mom, flying with Aunt Kim to visit you and
grandma and Aunt Dani. I remember Riding in the car with you and
austin; a long car ride listening to country (your choice) and metal
(his). You told me stories to pass the time, experiences of life in
the navy and tales of you and my mom moving from state to state
working wide ranges of jobs some twenty years before. When I was 12 or
13, we did it again, (without two hours in a car) but with all the
stories of your passed which never got old.
You became my tech advisor, my movie recommender, my tv show
introducer (SG1, anyone?) I’d get flashdrives and hard drives in the
male and eagerly connect them to see what great finds you’d decided
worthy of showing me. Later on, the tables turned and I became a sort
of counselor, confidant, soundboard. You’d call me up at one AM,
sometimes to my chagrin, but I’d answer and have long, deep,
multifasceted conversations until three or four in the morning.
We differed considerably in our beliefs, and the way we handled
conflict. We were two people with our own strong views on how things
should be done, but at the end of the day, we related. We related on a
deep emotional, mental level. We knew how it felt to deal with
challenges, and the winding jumbled web of our own, often too crowded
minds. Neither of us possessed an affinity for telling people how we
felt, but by no stretch of the imagination did we not feel.
Wherever you are, take this letter as a tangible token of what you’ve
meant to me. These words are the gateway to the memories within, but
they are only the black and white picture of that which I will hold
with me for years to come. You’re probably looking down on us telling
us to stop blubbering and being all sentimental, but actually, this
post isn’t me commemorating your life, it’s me celebrating it just as
you asked me to do.
Now, do me a favor; find grandpa on that boat I’m sure he’s found by
now, and tell him I said hey. Do some fishing for me while you’re at
it.