#DearMe – A Letter to My Younger Self in Honor of International Women’s Day 2015

#DearMe, A Letter to My Younger Self in Honor of International Womens Day 2015 - Words I Wheel By

Shortly after my first love and I broke up, I wrote a letter to my younger self. At the time, I intended to bury it away somewhere to be forgotten, as it was just meant to be a private way to help myself heal. But every couple months or so, I’ve found myself pulling up the letter again on my computer, reading it over, adding to it, finding comfort in it.

Then, the other day, I learned about #DearMe, an empowerment campaign in honor of International Women’s Day 2015, encouraging women to write letters sharing advice with their younger selves. I feel it’s time to dust off my own letter again and put it out there into the world.

This letter will never be finished. Each year, as I grow older, I plan to read and reread, write and rewrite, hopefully building on what I want 15-year-old Emily to know. And while this letter is deeply personal to me, and I’m specifically sharing it for International Women’s Day, it is my hope that no matter what age you may be or how you identify, these words will resonate with you, reminding you that you are always enough and never alone.

blue and purple divider line

Dear Me (15-year-old Emily),

I know how your eyes scan the room every time you go somewhere new, wondering if today will be the day your gaze settles upon a guy who just might accept you for who you are. I know how you lay awake at night envisioning what the future might be like, if only a guy could accept your disabled body. I know how you think that day will never come.

But the day will come when someone will accept you. He will tell you that you are the most beautiful girl in the world. He will tell you that you can trust him. He will tell you he loves you.

And he will be a wheelchair user too. I know that’s not an option you’ve been considering, but I promise when you open your mind to him, you will feel like he can relate to you in ways no one has ever understood you before.

Then he will leave you. He will break your heart and break your trust instead of breaking your fall. And it will hurt in ways you never imagined.

Don’t let him be the source of your self-worth. For that matter, don’t let anyone be the source of your self-worth. You’ll face rejection for being disabled and you’ll face rejection for being the girl you are. When you’re met with discrimination or a lack of acceptance, don’t just sit there and take it.

Learn to love yourself for all that you are. Gain strength that will be there to keep you going even when life shoots you down. That cannot come from outside you. It will only come from within.

I know these sound like words in the self-help books that made you roll your eyes and laugh as you pulled them from bookstore shelves. Quit laughing and start listening. It will save you a lot of pain in the years down the road.

Please, don’t give any of yourself away before you accept yourself. Learn to embrace your disability as another part of what makes you, you. Learn that just because you’ve got a body with scars and curves and a wheelchair attached to your butt, does not mean you’re not beautiful just as you are – your brain, your body, every part of you.

I won’t lie to you: Life as a disabled woman will continue challenging you to the core at times. Know that even in the hardest moments, you have so much to offer the world. Stop doubting yourself. More importantly, stop believing that you will only be validated and whole when someone looks at you with romance in his eyes.

Remember the pain of heartbreak is an experience not limited to the disabled world, nor is the joy of reaching your dreams. If there’s a day, a week, or a month when it feels like you just don’t fit and nothing is right and everything is wrong, know that you are far from alone in this world.

Focus on finding joy in who you are, on finding your way to a career path that will both fulfill your dreams and give you the opportunity to make a difference in people’s lives. Remember how capable you are, no matter what message society may send. When it feels like you’ve been left out of nondisabled life, never forget that your life is no less valid.

I promise write to you again in a few years as I work to gain self-worth, self-acceptance, and pride in being a disabled woman that I wish you’d fight harder for now. But in the mean time, hang in there. You’re going to become a strong woman, and you’re going to be alright.

Love you always,
23-year-old Emily

Mothers and Daughters: Guilt Has Nothing on Unconditional Love (A Guest Post on What Do You Do, Dear?)

Mothers and Daughters - A Guest Series on What Do You Do, Dear?I am out-of-this-world-excited today, because I’ve got a guest post up on What Do You Do, Dear?, a blog written by Mary Evelyn, a lovely mom of two beautiful kids, one who has a disability called spina bifida. In honor of the birth of her daughter, Mary Evelyn has been running a Mothers and Daughters series on her blog. So, I’m honored that she gave me the opportunity to share openly and honestly the story of me and my mother – a story of how even the strongest guilt can be overcome by unconditional love.

I hope you’ll take a moment to visit Mary Evelyn’s site and not only read my post, but also stick around for a while and read her incredible, warm, and heartfelt words.

Mothers and Daughters: Guilt Has Nothing on Unconditional Love

Reflections On Language Through the Lens of Disability

Reflections on Language Through the Lens of Disability - Words I Wheel By
If there’s one thing you’d figure out right away from reading my blog, it’s that I eat, sleep, and breathe activism. I check my phone first thing in the morning and use it right before I fall asleep to find out what I missed in the disability/social justice world. (My sleep cycle is not happy about this.) I write about the disability experience like it’s my job – oh, I mean, because it is my job. And I love it. Really, I do. But sometimes, I can’t help wondering if advocacy has completely taken over my mind, disrupting my ability to take things at face value.

I’ll explain what I mean with an example. Last night, I was listening to the audiobook version of Bird by Bird, written by Anne Lamott. It’s a book on the art of writing, one I’ve been told is a must-read time and again. I found myself taken by the words, pulled in by the deeply human and incredibly poignant air of Lamott’s stories and advice. Then, a line stopped me in my tracks. Lamott shares what she tells her students when they ask her how to sit down to begin writing:

“You put a piece of paper in the typewriter, or you turn on the computer and bring up the right file, and then you stare at it for an hour or so. You begin rocking, just a little at first, and then like a huge autistic child. You look at the ceiling, and over at the clock, yawn, and stare at the paper again.”

I had to go back and listen to the words again. I Googled the quote, reading it over and over. I was troubled by the use of autism as an analogy for a writer’s struggle. Why was it necessary to use the term “huge autistic child” when surely a writer as skilled as Lamott could have used another comparison to convey the same idea?

This moment of pause happens to me nearly every time I encounter a reference to disability. I search for the meaning behind what was said. My mind runs through a checklist:

  • Is the language discriminatory?
  • Who might be hurt by it?
  • Why did the person write or say what they did?
  • How could the language be changed?
  • Does the language actually need to be changed?

I’ve basically trained myself to think this way. It’s become my gut reaction, this hyper-focus on how disability is portrayed. (Case in point: My first ever blog post was about the problems with the popular saying “There is no elevator to success. You have to take the stairs.”) And this is important. There are far too many times when language can be downright offensive or a total misrepresentation of disability. But language is rarely ever a clear cut matter. On the one hand, casually mocking disability is a practice still far too ingrained in our culture. On the other, I definitely can’t always assume ill intent because I know most people mean no harm.

The same goes for when discrimination is unspoken or subliminal. This morning, I was reading “15 tips for public speaking that apply to shining at work, and just about everywhere else” by Danielle LaPorte (because I’ve got some public speaking gigs approaching and I’m always up for more. Shameless plug). All of the tips were valuable and full of insight, but again, I found myself hung up on one line:

“High heels are a must. Because, it’s not how you feel, it’s how you tower.”

My first response was “Hey, what about me?!” I use a wheelchair, and I can’t stand up at all, let alone in high heels, to tower over someone, but that doesn’t mean I can’t command attention from a room while sitting down. The thing is, though, that I know that negative intentions were the furthest thing from LaPorte’s mind. She was trying to give advice, not trying to insult disabled people. But the reality is that disabled people are the world’s largest minority. There are approximately 1 billion of us. So, the fact that disability still hardly crosses mainstream consciousness can be tough to swallow, especially when I’m reminded of that almost everywhere, every day.

That being said, in the case of what Lamott wrote, the word choice was poor, but I see it was not meant to be cruel. And in the case of LaPorte, there was clearly a lack of awareness of the implication of her words, but again, it was not meant to be cruel. For both, I was still able to take away valuable messages, disability issues aside.

This makes me think: can there ever be a time where I can take words as they are, and not be concerned about the deeper meaning? I am certainly not ever willing to accept the use of downright insensitive, hurtful, or attacking language. (Like the “R”-word. If you use it, just…don’t.) But when can I take something at face value without feeling guilty about it?

It’s become instinctual for me to view everything through the lens of disability and activism. And that’s okay. It’s human. The work we do and the lives we live inevitably shape our worldview. But I’m learning not to let my worldview become too clouded, because even as we push through the fight for equality and acceptance (and as much as I wish this wasn’t an issue to begin with), I believe there’s joy to be found in things that are, with some unfortunate exceptions, beautiful or elegant or lovely – without fear that we’re not being responsible activists by appreciating something for the good it can still bring to our world.

What’s your take? How does your life shape your perceptions of the world around you?

Photo credit: Lucas Hayas / Foter / CC BY-SA

DIYAbility – Embrace Your Inner MacGyver & Adapt Your World

DIYAbility - Embrace your inner MacGyver. Adapt you world.

Anyone with a disability can tell you the world wasn’t made with us in mind. Rarely are mainstream products designed with a focus on accessibility. The Adaptive Design Association, also known as DIYAbility, is an organization whose mission is to change this reality by putting the power of adaptation in reach of the disability community. Started by John Schimmel and Holly Cohen, both professionals with vast experience in using and developing adaptive technology, DIYAbility is proof positive that all it takes is a little ingenuity and teamwork to improve accessibility of things we all use in our daily lives.

How? The process is known simply as “making,” and it’s not limited to adapting items. Makers are people with a passion for tinkering, creating, and inventing things, often to fulfill needs not already met by existing items. DIYAbility, a Makerspace in New York City, came to be as John and Holly realized that members of the disability community often required adaptive equipment or highly specific adaptations that come at incredibly high costs. Making can serve as a solution to avoid grappling with prohibitive expenses, while also getting in touch with your inner MacGyver. As John explains, “By educating members of the community in how to create their own modifications, it is not only enabling increased independence, but also empowering them to come up with their own devices and modifications to meet their specialized need.”

Adaptive Design Association Makerspace in New York City

I had the chance to experience DIYAbility’s philosophy in person, trying my hand at adapting a remote control car at a workshop they hosted called “Toy Hacking for the Holidays.” Hacking goes right along with making, as it involves taking an already existing item and modifying it to be more functional. During the workshop, I learned how to alter the inner workings of the remote control car to allow it to be more accessible for people whose physical disabilities make it challenging to use a typical joystick.

Now, I’m not exactly skilled in the art of deconstructing electronics or wielding a burning hot soldering iron, but John and Holly were there to help, demonstrate, and explain every step of the way. I had to take apart the remote control and rewire it to create two jacks (like the things you plug your headphones into) so that I could plug in a big button which could be used instead of the joysticks to operate the toy car. (I know, I’m awesome at writing technical descriptions.) For kids with difficulties with dexterity or limb function, this would make it easier to play with the car.

People brought tons of cool things to adapt during the workshop, like a dancing zebra stuffed animal and a toy kitchen mixer. It’s pretty impressive how all it took was a few hours to change the inner workings of a whole bunch of different battery-operated toys. And while I was just having fun and learning something new, DIYAbility is actually accredited as a continuing education organization for The American Occupational Therapy Association. Total win-win for everyone.

Using a screwdriver to open the remote to a toy car and soldering at DIYAbility.

One of the occupational therapists I collaborated with was a lovely woman named Aarty. You can see us in the video below with our hands wrapped in aluminum foil, making a high-five motion that causes my car to move. Basically, the foil conducts electricity and can be used to create a makeshift button if you don’t actually have an adaptive button to plug into a toy. Plus, this video is proof that even after all of my messing around with the remote control, I actually got the car to work! At the end, a lot of the working toys were donated to therapy facilities. I have to admit though, I kept my little car so I can look at it as a reminder of what’s possible.

John and Holly believe the processes they teach through DIYAbility hold a ton of potential (and I do, too): “Once someone learns what they can do for themselves, it opens the door for more learning and creating. We have seen that once an individual who is, for example, dependent on others for simple tasks like turning a light on and off, can independently do this through technology, they start investigating others areas that they can be more independent. It encourages thinking outside of the box and enables the end user to be an active participant in their daily needs.” Promoting independence through creative thinking and problem-solving is, I think, one of the hallmarks of the growing field of adaptive technology. And because access is something that can improve everyone’s lives, regardless of ability-level, it’s about time for adaptive hacking and making to take off as a larger movement, as a response to the constant barriers imposed upon the disability community by those not conscious of the importance of access.

I left the DIYAbility workshop feeling energized and empowered, and wanting to talk about it to anyone who would listen. I’ve barely scratched the surface of what there is to learn, but what I know for sure is that there are endless possibilities for the ways in which the things we need and use every day can be made accessible. Creativity and collaboration are the keys to adapting the world around us.

Words I Wheel By’s Top 5 Posts of 2014

Words I Wheel By's Top 5 Posts of 2014

Words I Wheel By has been my little home on the Internet for nearly a year and half now. It is where I have turned to sort through my thoughts and emotions, to work on my activism, to share my frustrations, triumphs, and joys. Often, as Flannery O’Connor once said, “I write because I don’t know what I think until I read what I say.” Words are my constant companion, and this blog has given me the chance to share them with more people that I could ever have imagined in my wildest dreams.

With 2015 upon us, I have even wilder dreams to continue growing, expanding, and advocating for the fundamental human and disability rights that I so deeply believe in. Most importantly, I plan to continue using Words I Wheel By as platform to connect with people and learn more from the world around me.

As 2014 comes to a close, what better way to wrap up the adventure than to share once more the top 5 pieces I’ve published throughout the year? And just as I shared in my top 5 posts from last year, these are the posts that resonated with readers, stirred up controversy, made people think, and helped me grow. I’m immensely grateful to everyone who has taken the time to read them.

1) The Politics of Disability Representation in the Wendy Davis Wheelchair Ad – As the most popular piece I’ve published on this blog ever, this post tackles the controversy surrounding politician Wendy Davis’s ad focused on competitor Greg Abbott’s disability. My take was different than many people expected, and evoked strong responses. What did you think of the ad?

2) Generation ADA is Here to Stay in the Fight for Disability Rights – I hammered out this post on my birthday while in the car after discovering an advocate from an older generation accused advocates from my generation of being careless and lazy. When we’re all working towards the same cause of expanding acceptance of disabilities, there’s just no need for generational divisions. What’s your take on age differences in activist communities?

3) Playing Disabled is Never Cool – After reading a New York Times op-ed that seemed to celebrate Justin Bieber for making wheelchairs “cool,” I couldn’t stay silent. I worried this piece sent a message that pretending to be disabled is a fun thing to do, and that’s just not the case. How did you feel about Justin Bieber’s supposed faking disability to use a wheelchair in Disney World?

4) I Am More Than An Empty Wheelchair: Speaking Up Against Ableism – Writing this piece proved to be an incredibly empowering experience. When I was ignored by an usher at a disability-related event, I knew I needed to speak out. Has anything like this ever happened to you?

5) A Mother’s Day Reflection on Mother-Daughter Disability – This post hit home for a lot of people – especially my mom! I’m proud to have someone so close to me who shares the experience of disability. Are you the only disabled member of your family, or are you in a unique situation similar to me and my mother?

Happy, happy New Year, everyone! Here’s wishing you a peaceful, fulfilling, and powerful 2015!