Dedicated to Daniel

The day is Saturday. The hour is, quite simply, way too early for a weekend morning. My stomach growls into my silent room, but my heart sings a melody to harmonize with my elated mind. It’s Daniel day, and I itch to wake my mother so we can take to the road for springfield.

The wheels of my mom’s Toyota thrum along the open highway, cutting across the miles one by one as I dance with the rhythm of my Spotify playlist. Laughter and talk emminates through the car. I’m not the only one filled with the energy of our weekly visits. So many of our friends clammer for a spot on these trips, or in what I call the Daniel express.
By this point, each of us is armed with a large coffee and a belly full of breakfast; each with our own stories and songs and smiles for Daniel in the day ahead.

He greets me with an enthusiastic hand shake and a squeeze of my fingers that has always been uniquely his. It makes me grin and laugh like a child on Christmas every time without fail. There is no need for sound or words in that moment; that gentle touch sends a million messages with every motion, and it’s those little hand movements that get me through the days in between our time together.
Looking in from the outside, we supported him through a difficult time, but the reality is that he supported us as we navigated this struggle along with him. That was Daniel’s nature; supportive, optimistic and kind. That is how I knew him, and that is how he will forever be remembered in my mind.
In my heart, I know that you’re quietly watching, listening, and smiling, Daniel. You’re keeping track of the boston sports teams, checking up on your friends, and diving deep into the endless library of books I’m sure they have up there in heaven. Thank you for an amazing seven weeks, and for bringing me closer to so many people during that time. You may not be here but we will continue remembering you whereever you are just as you would for us.
Tell Jessee, Linde, Roz and Terry that everyone from Perkins says hello.

Boo! Anxiety Management at Work is no Game

Photo of Goblin Statues

Yes, it’s Halloween, and it’s also the last day of disability employment awareness month. This, to me, sounds like the perfect time to talk about anxiety in the workplace. No, I promise it won’t be scary, but something that doesn’t get talked about enough.
You might not think it, but although I often seem cool, calm, and composed, I am also prone to spikes of anxiety. All sorts of things can trigger it; a sudden schedule change, an upcoming meeting, someone’s bad attitude, or something else entirely outside of work. This last month in particular, I have had to exercise and my methods of managing said anxiety so it doesn’t interfere with work. Maybe these tips will help you in navigating your anxious moments, or educate employers on how to support a staff member during these times. I would love to hear others’ thoughts and open up a stronger dialogue to raise awareness around such an important issue.

Auditory Stimulation

As a blind person, I am constantly receiving auditory information. When not in meetings or conversation, I often listen to music or a book; something familiar. This helps me direct my focus away from what’s making me anxious and into the tasks at hand.

Crystals

It may sound a bit crazy, but I am a firm believer in the various powers of crystals, from healing to protection to clearing negative energy. The stones give me something tangible to feel when the world gets topsy-turvy, and I keep them all around me most places I go. Sometimes just knowing they’re there and that they have properties helping me out is enough to calm the waters and redirect my mind.

Time Management

We hear all the time how important time management is, and I understand that it gets old. However, being aware of my anxious time is important for emotional management. Sometimes, I’ll allow myself a specific amount of time to get lost in my thoughts and let the feelings wash over me before snapping out of the turmoil and into the physical world.

A Quiet Space

A quiet space can be crucial for allowing that time, calming the mind and refocusing attention. Sometimes that means closing a door, taking a walk, or going for lunch, as long as those moments to me are achieved. Carefully timed and strategically planned, I always come out refreshed afterwords and ready to take on whatever else the day brings.

Self Expression

It’s helpful for me to express my thoughts and unclutter my mind. Sometimes this is done by talking through them, or writing them out. For some, this includes counseling, but doesn’t have to. After all, therapy can take all kinds of forms and it’s important to find the one that works for you and helps you navigate your situation.

Want to see a creative form of self expression in action?

You’re welcome to check out and subscribe to Friendship Is My Oxygen, a podcast made by some friends and I which uses 3d audio to chronicle the thoughts feelings and moments we encounter while our classmate battles serious illness.

How do you handle anxiety at work?

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Five Tips for Coworkers of People With Disabilities.

October is a month focused on activism and outreach across the disability community. Among other things, it’s dwarfism awareness month, and disability employment awareness month. Both are important to me as are other campaigns going on in the next few weeks, but it’s the ladder I decided to focus on today. Specifically, I thought it would be useful to write out a few tips specifically for co-workers of employees with disabilities, since it’s not uncommon for the general population to not know how to interact with us in various situations.

Ask Before You Move

Perhaps one of the most frustrating things a co-worker can do is move my things without informing me of the move. This is especially true for me as a blind person who is also very short. If you move my phone, not only can I not see it but I might not be able to reach and find it. Talk about a wrench in your conference call plans!!!

Use Visual Words

Yes, I totally watched that youtube video. Asking me if I listened to it or heard someone enter the room sounds incredibly tacky. Just like you would with anyone else, ask if I’ve watched the video or seen the boss enter.

Proper Guide is Gold

There are many situations when having someone guide me is useful, and for those I will usually ask to take someone’s arm. However, I have been steered by the shoulders, pulled by my clothing, or led along by the tip of my cane. Neither of these are effective or safe methods of guiding a blind person.

Introduce Yourself

Sometimes it’s difficult to identify a person by a simple “Hi” or brief “good morning”. It never hurts to introduce yourself with a “Hi it’s Jim,” even if I know who you are nine times out of ten. Being left stunned because I can’t identify a greeter is never a great way to begin the morning.

Ask Before Assuming

No question is a stupid question, and you’ll feel better asking rather than doing. Think I’m lost? Not sure if I recognize your voice? Wondering if I can see the image projected on the board? That’s fine, just inquire. I, and most people with disabilities, will answer almost anything.
Some of these tips have come from encounters in the workplace, and others simply from navigating the world as a person with disabilities. Regardless of the scenario, they’re applicable in all situations but especially the work place. Have a tip I should add or a question about one already here? Comment here or on social and we’ll continue the conversation.

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Friendship Redefined

Daniel and I

Ten years and a few weeks ago, I started as a junior at Perkins School for the Blind. The first class I remember walking into was English, where I met a fabulous teacher and a team of students, some of which I would continue a strong friendship with to this day. One of these was Daniel, and it wasn’t long before he became a frequent friendly face in my day to day movements, attending English, chemistry, algebra, and even film classes.

Daniel was a quiet, intelligent student who participated in everything with his best at all times. Sometimes that wasn’t so easy, when his various health challenges factored into a day, but his determination always persevered. We performed piano duets together, teamed up to make short films, and supported each other’s interests even if they weren’t our own. Outside of the classroom, we could bond over harry potter, while I drove him crazy with singing and talk of music, and he did likewise to me with stock reports and sports scores. Overtime, we established a familiar, comfortable rhythm, with his enthusiastic greetings, upbeat energy, and caring personality which remained a constant fixture in my three years at school.

Daniel and I dancing together

Friendships face their challenges, and ours did. We argued, lost contact, reconnected. He taught me about loyalty, forgiveness, kindness, and what it really means to be a friend. In short, Daniel has edefined what it means to be a friend on a deep, inexplicable level, exemplifying a true team player any sports organization would be proud to have on their side.

It’s that team support that I and others in the community send Daniel now just as he would do for us. Recent weeks have been increasingly difficult for him due to worsening respiratory complications resulting in hospitalization and intensive care. Still, he continues to be himself in every way he is able with the strength and encouragement of those who have impacted his life. He has played an impactful role in mine more than he likely realizes, and I’m thankful to be part of this journey alongside him.

For those who know him in any way, your support and words are welcome in any form you can send them. If you don’t know him, well, you’d like to, and your additional support is of course received with gratitude. If he reads this or hears this somehow, then stay strong and we’ll keep in touch, and if he doesn’t, well, we’re still staying in touch, got it? Someone needs to make sure I know what Boston sports team’s winning, where I should be investing, and when I’ve had too many cups of coffee, right?

No Dollars for Domino’s

Enjoying pizza with a guy friendI’m not one to let much get in the way of good food. I’ve navigated unfamiliar city streets, argued with lost delivery drivers, and read inaccessible menus all for a tasty bite. If there’s one thing I love, it’s a quick call to Domino’s at any time from anywhere, but now, I vehemently refuse, and there’s a good reason why.
We see them all over; in so many towns, delivering pizza, sandwiches, pasta and more for rather affordable prices. We can call, visit a store, order online or through an app. From my experience the app and website both work fairly well from an accessibility standpoint, but did you know that the successful pizza chain refuses to make their web presence accessible to people with disabilities?
Three years ago, our friends at Domino’s were sued because their pizza tracker component was not accessible to a blind person. Instead of apologizing and trying to do better, the company argued that accessibility would be costly and was not required by ADA law. The truth is that the ADA does, in fact, cover mobile and web as long as the website pertains to a US business which have physical locations. Although a federal court ruled against Domino’s in favor of accessibility, the company is continuing to fight by petitioning the supreme court to take the case this fall. The outcome of this case could alter digital accessibility as we know it for better or worse depending on the final conclusion.
In my mind, it’s simple. I will not give money to a major chain that doesn’t believe patronage from people like myself is important. Whether or not their digital applications have worked for me doesn’t matter, because at the end of the day, they don’t care about accessibility as a whole and that’s a disappointment. They could make or break accessibility standards for years to come, and that could mean so many backwards steps for the advancement of the lives of people with disabilities. Accessibility doesn’t need to be costly. Accessibility needs are in everyone’s future, and accessibility is for everyone! Let’s not ruin the amazing work that’s been done to make an accessible web thus far. Until Domino’s understands the importance of accessibility, I’ll take my dollars elsewhere.

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What is This?

What is this?
This is so easy it’s scary
So beautiful it shouldn’t be real.
Flowing like effortless wind it envelops me
Spilling forth all that’s with in me concealed

This is my joy at the start of a work day
This is my smile at the end of the night
This is my motivation, inspiration, and elation.
This is, quite simply put.. right.

This is just two people coming together
To break down the walls and to wash away fear
This is what anchors my world when it’s spinning out
Calming the mind when it needs to be clear

This is what some might call being in love.
This is when I say…
This is.

Pros of Dwarfism

View of dance floor and stage at LPA conference

                One might not think that being a little person has its advantages, but actually, it has its high points. No, no pun intended there. Since this week holds the LPA national conference, it’s a perfect time to talk about some of the more favorable moments that having dwarfism brings.

  • Ducking under things:
  • How do you feel when you’re at work and need to plug your laptop in under the desk? While the rest of you moan and groan about getting under the table to grab the dropped fork or plug in the phone charger, it’s significantly simpler when you’re already low and don’t have to contort your body just to get in that little space. As an added bonus, such spaces are perfect for us to hide in if need be. Also, I often use this as a shortcut to navigate around or under the guide ropes which denote where people should be standing in line.

  • Kids’ prices
  • Sometimes we’re mistaken for children, and that’s annoying, but once in a while it works for us. When an admission fee is less for a child and the person at the door thinks I qualify, well, I’m not going to argue the price reduction. Sorry not sorry!

  • Interaction with children
  • For many young kids, disability is a subject of great curiosity. They point and ask questions as we pass by, but often they’ll wander right up to a little person and strike up a conversation. Since we’re on their level physically, children often come to think of us as equals even though they understand we’re adults. For me, this has led to many games in hotel pools, because why not let out my inner child? We make great baby sitters, child care specialists and pre-k teachers for this reason.

  • Smaller sizes
  • Some people with dwarfism, like me, have short arms and legs but typical sized bodies, while others have small features in every sense. Either way, we have shorter sleeves, smaller shoes, etc. For packing, or laundry purposes, this can be rather useful. We have less to fold and find room for, making our clothing easier to manage.

  • legroom
  • People often complain that they don’t have enough legroom when flying. Well, for us with short legs, this is a little less of an issue. I’m not saying plane seats are all that comfortable, but I do enjoy not having leg cramps after a four-hour flight.

  • Sleeping on couches
  • You know those moments where it’s late and your still at your friend’s come three A.M? For someone who’s height is around 4 feet, it’s easy just to lay down on the couch and crash. Literally, we can lay across it and still have space to stretch out, as long as we don’t try to roll over. This fact has come in handy quite a few times and quite a few ways in college and at conventions both.

  • Books, TV and movies
  • There’s a lot of media which features little people. From reality TV shows like Little Women LA, to books with dwarf characters like Eragon, and movies like Harry Potter. Although none of these accurately portray the lives we lead, it opens up a dialogue which people connect with. Most disabilities don’t receive so much airtime, but the fact that the little people community does allows for plenty of room for discussion and education. Many people argue that media portrayal is a disadvantage, but I have found it far more helpful than harmful in the end.

  • LPA

As a last added bonus, I’m including what I believe to be the greatest advantage of all. I got involved in the Little People of America shortly after graduating high school and began attending events and conventions across the country. For me, LPA was a great way to meet others with dwarfism and learn about aspects of living with dwarfism. This sort of interaction was one that could never be found anywhere else and has been a great experience for me. To all those currently in San Fransisco, have fun!!!!

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Proudly at Pride

Image of a balloon archway which marks the end of Boston's pride paradeIf you know me, you know I’m not much of a mmorning person, but saturday morning came and I was ready to go! The day started with a pre-pride brunch lead by the fabulous AccessAI team and Boston City Counselor Michelle Wu. AccessAI, a local pilot program which allows for Aira access throughout our transit system, also allowed for free usage throughout pride, and I, like many others, gathered to connect with and support this strong team. Located near the start of the march, we all decked out with swag, enjoying breakfast sandwiches and copious amounts of coffee before snapping a few photos and setting out for Boston Pride.
Here, I used that same Aira program to grab a train and make for City Hall where the marchers would finish. Although I had never used the program and am not familiar with the train system, this success was invigorating and empowering; the perfect setup for the perfect pride mindset. At city hall plaza, music was pumping and people were everywhere! The energy was contagious, with friendly strangers aproaching, chatting and even describing some of the festival that surrounded us from what enders were where to the various creative outfits worn by celebratory participants. Finally, an announcement was made to find a spot to stand out of the parade route in preparation for the countless marchers to come through.
Rainbow themed marching band passing by
Standing in a crowd of eager cheerers, I loaded Aira again. This time, I was ready for descriptions of the people marching by. Excitement grew as they aproached, with people all around clapping and chanting and yelling! Finally the groups came one by one, with banners and flags, brightly colored clothing, streamers and all sorts of decorative creations. The groups spanned all ages and capabilities; children, grandparents, people in wheelchairs, on bikes, of all ethnicities and even with pets. Some played or performed music as they passed, while others handed out strings of colored beads, flags or fans for the summer heat. With every group that went, we clapped, cheered, and waved, calling out the words on their signs or simply, “Happy pride!”
When it was over, the plaza was teaming with marchers and watchers alike, returning to its social upbeat atmosphere. All around were people moving to nearby shops or festival events. For me, it was time for another cup of coffee in a local coffee shop where I again chatted with the various attendees that filled the space. Then, it was off for some much-desired dinner and finally to make my way home.
My first pride experience was inspiring and uplifting, showing me the strength of the local LGBT community and those beyond. We are people of all backgrounds, and we are proud to be the uniquely diverse individuals we are. The world in which we live is a mostly safe and accepting one, but there is still plenty of work to be done and that extends far beyond an event which occurs one day a year. Experiencing this year’s pride has given me the motivation to be even more active and outspoken in our fight for understanding, equal and safe conditions. Yes, I’m proud to have been part of Boston Pride, and will most certainly be back next year.


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LGBT+ME

Pride flag

The LGBT community has been part of my life since I was about thirteen. No, that wasn’t the time I decided I identified as LGBT, but the time I began learning about what it encompassed. Trust me, when your best friend leaves for highschool and comes home to tell you she’s a lesbian after always liking guys, you’d want answers too.
Open-mindedness was part of me even then, so I embraced the community as an active ally in short time. That is, until a little way through my own highschool experience where I realized that, just maybe, I could be attracted to girls and guys both. So, did that make me bi?
This answer came in college, where I learned about gender identity as I immersed myself in the school’s student body and greek life. The word I’d been looking for was “pansexual”, meaning that I don’t see gender as a deciding factor in who I romantically like. Establishing this transformed me from an LGBT ally to an outspoken participant in LGBT events, and that hasn’t changed in the slightest.
For me, there has never been any “coming out” process. There has definitely been a process of self-transformation in order for me to figure out where and what I identified as, but none of that was ever secret. People at school and home saw me going to LGBT groups, and if anyone had questions in that regard, I would always answer with whatever I could at the time.
This month is pride month, and I’m proud to be a part of this diverse community. I’m proud to do what I can to advocate and stand beside those around me fighting for their rights, their safety and their love. I’m proud to say I’m attending my first pride parade in Boston tomorrow. I’m proud to be me, and I’m proud to identify as LGBT+
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I Access Life

Three young guys at a restaurant table

There’s a new app on my technological radar, and it’s called IAccess. Before anyone gets mad, it’s not just for iphone, but for android devices too. This app is new, but has loads of potential. In a nut shell, it’s like Yelp, but with a focus on accessibility.

I am completely blind, and I have dwarfism, which for me means I have difficulty with long walks, high seats, and loads of stairs. Not that I can’t deal with such things, but that I try to avoid them.

Using IAccess, I and others can rate the accessibility of all types of venues. Yes, accessibility looks different for everyone, but these ratings and comments make for a great start when deciding to access a venue or not. As of now, its focus is mainly on wheelchair accessibility and allows a location to be rated on accessibility of the entrance, bathrooms, interior, and parking, after which additional comments can be added.

Since this app is crowd sourced, it means that there are no ratings unless we rate places ourselves,. This makes it ideal for posting opinions on accessibility, but also means that if we want to see such information we must get more involvement on the app. It also means that, in my opinion, the developers should add more rating options to the mix in order to accommodate a wider range of disabilities. Is the menu or inventory accessible online to the blind? Is the atmosphere loud or quiet, well-lit or not so? What kinds of seating do they offer? Unfortunately, there is only a small amount of writing allowed in the text box so some of this extra information couldn’t fit if entered in manually.

We all want to know what type of situation we’re getting into before we get there, and that’s especially true when it comes to accessing any kind of public setting. IAccess is a fantastic solution the question of venue access, as long as people of all types put their input into the mix. No matter your abilities or challenges, definitely toss your thoughts into ratings of places you’ve visited. I, personally, look forward to more ratings in my area and the changes that the developers put in place. So if you’re looking for a cool new app to try and want to contribute to a neat project, I suggest taking a look at this. Together, we can build a more accessible world.

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