Thankful For Online Friends and the Technology That Connects Us

A white keyboard, mouse and notepad against a blush pink backgroundIt took me a while to accept the label “disabled,” even though I’ve been disabled my whole life. I used to think it was a bad word, something to be ashamed of – and that caused internal strife, because I loved who I was. It wasn’t until I met other disabled people that I embraced the identity comfortably and proudly – and I am thankful for having met and befriended these individuals. Even though we live far from each other, we stay connected online; the internet is tantamount to our survival in many ways.

My disabled friends taught me about disability rights and history, and gave me the tools I need to navigate society as a disabled person. They showed me programs I could utilize to keep my Medicaid while working. They told me different ways to handle rude comments from often well-meaning strangers. And most importantly, they taught me how to be comfortable with my body and mind, and to celebrate even the smallest of victories. It’s a lot easier to tackle the ableism in society, and the negative effects of my various disabilities, when I know hundreds of other people have gone through similar situations.

This holiday season, I am thankful for these connections I’ve made. I am thankful for the internet, which gives us the ability to form support groups and engage in activism. Considering the decades-long timeframe of the disability-rights movement, the ubiquitous nature of social media is a fairly new advancement. I didn’t have access to online forums until I was in my late teens; Facebook wasn’t created until I was in college, and Twitter began after I graduated. During those formative years, I felt very alone as a disabled person, so I don’t take the communities I have access to now for granted.

I wish every disabled person had the financial and physical ability to be a part of an online support group. Millions of people have the means to engage online, but there are disabled people who can’t afford the cost because they live on Social Security. There are people who can’t afford the tech needed to make computers accessible to them. And there are disabled people living in institutions who are wrongfully denied access to tech.

In addition to spending the holidays with family, I will be spending a lot of time with those online friends who changed my world in ways I could never repay. Have a wonderful Thanksgiving.

Are you looking for an online support group? Meet other young women with disabilities on Easterseals Thrive. Find Thrive on their website, Facebook and Twitter.

Erin Hawley is the Digital Content Producer for Easterseals Thrive, and has Muscular Dystrophy, anxiety, and scoliosis. She is also a middle-school teacher, writer, and professional nerd.

More posts from Erin:

 

When Saying Goodbye to a Thanksgiving Tradition Brings Sadness

A piece of pumpkin pie on a wooden table with two pinecones in the backgroundThanksgiving week is here once again and it will be the same as it has been since 2000. My dad and I will leave Saint Louis and drive almost 14 hours to go to my aunt’s who lives outside Washington D.C.

It’s been the same for so long that it isn’t just a tradition — it’s expected. From the towns we drive through, to the feeling of relaxation I feel when we get there, to my aunt giving me all sorts of trouble and kidding with me about food touching to the drive home on Sunday as the sun comes up.

It’s all been the same for 17 years, but this will be the last one. You see, my aunt will be moving to Saint Louis next year so the traditions as I know them will come to an end. I, having Asperger’s, enjoy sameness. I want it. I crave it. And to know that this is the end is difficult.

Sure, Thanksgiving of 2018 will bring new traditions, new experiences, and not having to spend 28 hours in the car might be nice, but it isn’t what is known.

I wonder for others out there if holidays bring this same desire of sameness. My memories are kept in order by annual events throughout the year. This might sound strange, but my memories are associative and the trip to D.C. is more than just Thanksgiving; it’s the passage to winter. It’s the marking of the end of the year which, for me, is one of the saddest days of the year because it will never be the year it was ever again.

I’m 34 and you would expect that adjusting would be easier, but I know come Sunday morning as we leave one last time that it is going to bring tears to my eyes and a tradition that has spanned half my life will come to a final end.

Have you ever had to say goodbye to a holiday tradition? Join the conversation in the comments section.

Aaron Likens on a sailboatAaron Likens, author of Finding Kansas: Decoding the enigma of Asperger’s Syndrome, and the National Autism Ambassador for Easterseals, has spoken to over 80,000 people at over 900 presentations and has given to the world a revelation of how the Autism Spectrum Disorder mind works. His willingness to expose his inner most thoughts and feelings has unveiled the mystery the Asperger’s mind. Join him on his journey from hopelessness to hope.

More posts from Aaron:

 

We Need To See Disabled Women in Leadership Positions

Erin Hawley is the Digital Content Producer for Easterseals Thrive, and has Muscular Dystrophy, anxiety, and scoliosis. She is also a middle-school teacher, writer, and professional nerd. Join Erin and other friends of Easterseals Thrive for a Twitter chat on Thursday, November 16, at 6:00 p.m. CT. Find more details about the chat on the Thrive website!

A woman working on a laptopYoung disabled women need to see disabled women in leadership positions – not only in work, but in all aspects of life. Disabled individuals of any gender are already at a disadvantage when it comes to employment, raising a family, fostering relationships, and directing their care. These disadvantages mostly stem from ableism, which is the systematic exclusion of disabled people in society. But within this ableist framework, disabled people continue living; our world doesn’t stop because society says so.

Disabled women face an extra stigma. We are pressured to conform to impossible beauty standards. We deal with high rates of sexual and other physical assault. We are repeatedly told we are less than our abled, masculine peers, meaning we have to work twice as hard to get the same recognition. And we must also look at the ways queer identity, race, and class affect how we are viewed and treated by society.

Easterseals Thrive is a program that aims to empower young disabled women by giving them the tools needed to achieve the life they want. Through our social media communities or our offline mentoring program in Massachusetts, Thrive gives space for young disabled women to lift each other up so they can all become leaders. And when I say leaders, I mean everything from taking initiative to help out a friend, to running for political office. Being able to witness disabled women in these roles lets us know that we can exist and thrive just as we are.

I want the younger generation to recognize the struggles we face and how we are pushing against those struggles. And more importantly, I want young disabled women to see possibility – because that narrative is often ignored in mainstream media. We must celebrate disabled women more, like Tammy Duckworth – a Senator who advocates for disability justice and human rights. Or Keah Brown, who started the #DisabledAndCute hashtag to promote a positive self-image. These women are both leaders.

And if you want to chat with Keah about her work, you can! This Thursday at 7pm EST, Easterseals Thrive is hosting a Twitter chat called #DisabledWomenLead. We’re talking about ways young women can lead in a myriad of ways, and Keah is just one of our featured panelists. Other panelists include: Madeline Stuart, the first supermodel with Down Syndrome; Jen Venegas, a fashionista and lifestyle blogger with mental illnesses; and Jessica Jones, a blind art teacher. Anyone is free to join in the conversation, though! Just visit the website for more info.

 

Transportation Is Key For People with Disabilities in America

On October 3, WalletHub released its 2017 list of the Best & Worst Cities for People with Disabilities. A quick scroll through the methodology lets the reader know that economy, quality of life, and healthcare factors were used to determine how a city ranked overall. All three are significant factors that contribute to how, on average, a city provides opportunities for housing, employment, medical well-being, and the ability to enjoy a good meal at a favorite restaurant or a walk in the park.

We think there’s a factor missing in the methodology, though: Transportation. You can’t get there if you can’t get there.

The three quality of life metrics examined in the WalletHub research that come the closest to transportation include: number of wheelchair-accessible trails per capita, share of population within walkable park access, and walkability. All good, and metrics that Easterseals supports as part of its mission to make positive, profound differences in people’s lives every day.

Walking is a form of transportation and getting to parks or trails is dependent on completed pathways, curb ramps, and safe places to cross the road, but WalletHub missed out on the chance to measure a very important metric: availability of public and private transportation options. Whether bus, rail, accessible paratransit, taxi, ferry, shared-ride, bikeshare or a neighbor lending a hand as a volunteer driver, transportation availability is the key that opens the door to education, jobs, doctors’ appointments, shopping, and hobbies.

Easterseals has been at the forefront of helping cities in the U.S. address the transportation needs of people with disabilities. In her reaction to the WalletHub article, Easterseals blogger Beth Finke mentions that the availability of public transportation in Chicago means that she can live more independently, and as Karin Willison, blogger with The Mighty, points out in her own take on the WalletHub list, transportation is essential to quality of life and should not be left out of the ranking equation.

Transportation is important to Easterseals because we know how important it is for people with disabilities who want to live life as independently as possible. Easterseals has collaborated with communities across the country for over three decades to support the availability of ADA-accessible transportation.

From Easterseals Project Action’s work offering training to transportation professionals to the technical assistance we provide through the National Aging and Disability Transportation Center and National Center for Mobility Management to our local-level in-person facilitation that’s part of the Accessible Community Transportation Initiative, we want to help all cities in the U.S. be the best that they can be when it comes to providing affordable, accessible transportation.

 

What Happens When My Thought Process is Interrupted

A Shinkansen train

A Shinkansen train (source)

When you say my name while I’m in the midst of something, I’ll give a response of, “WHAT?” It sounds as if I’m angry, but here’s the thing: I’m not angry at you. I’m flooded with emotions and confused as to why the proverbial train stopped.

Proverbial train; let’s run with that…

Take the Shinkansen (better known as the bullet trains of Japan) known for their efficiency and high speeds. Let’s say you’re on an express train from Tokyo to Osaka. This, being an express train, has no stops between Tokyo and Osaka and when you’re on this train you’re expecting a quick journey. Let’s say, halfway through the trip, the train begins to slow and come to a stop at a station and the doors open. This isn’t supposed to be happening. There would be confusion among the passengers. Why did you stop? When will you be going again? Will you be stopping again? Of course the passengers will become irritated during this delay because it wasn’t planned for, nor was it expected. This is what daily life with Asperger’s is like.

In any thing I do, when I am doing it, I am like that Shinkansen express train. I am hyper-focused on the goal and when an unexpected interruption occurs, even mildly, my response is like the passengers on that train.

I mean no ill-will when I give a response that sounds angry. It’s easy for us to have tunnel vision and only see what it is that we are focused on. When I was in school, if I was working on something, I’d get irritated and annoyed at any person who spoke to me. Why? Let’s go back to the train example.

Let’s say the efficient Shinkansen wasn’t all that great at getting up to speed. Once up to speed all is well but getting up to speed is a challenge. That’s the way my brain is; once at speed I can focus with perfect clarity but that one interruption can bring about a complete change in ability to focus or achieve a task, hence why the unsuspecting interrupter is going to get what sounds like an angry answer.

This post isn’t to say that interrupting a person on the autism spectrum should be avoided at all costs. Quite the contrary; this post is to highlight the reason why you might get a response of annoyance and that we aren’t truly angry at you, we may just be angry at how difficult it is for us to change speed, to adjust our attention, and our fear of being unable to once again achieve the speeds we had been going.

Aaron Likens on a sailboatAaron Likens, author of Finding Kansas: Decoding the enigma of Asperger’s Syndrome, and the National Autism Ambassador for Easterseals, has spoken to over 80,000 people at over 900 presentations and has given to the world a revelation of how the Autism Spectrum Disorder mind works. His willingness to expose his inner most thoughts and feelings has unveiled the mystery the Asperger’s mind. Join him on his journey from hopelessness to hope.

More posts from Aaron:

 

9 Questions Kids Ask About Blindness

My Seeing Eye dog Whitney and I took a commuter train to a Chicago suburb last week to talk with third graders. It was Disability Awareness Week at Wilmot Elementary in Deerfield, and I was there to talk about what it’s like to be blind and get around with a Seeing Eye dog.

Whit's always up for a class visit.

Whit’s always up for a class visit.

I started our presentation to the eight- and nine-year-olds explaining three rules to keep in mind if they happen to see a guide dog with a harness on: don’t pet the dog, don’t feed the dog, and don’t call out the dog’s name. “Those things can distract a Seeing Eye dog,” I told them. “It’d be like if someone nudged you or kept calling your name while you were working on your spelling words at school. You wouldn’t be able to concentrate on your work.”

I suggested we come up with a fake name for Whitney. “We’re going to be here at your school for a while today, and you might want to say hello if you see us in the hallway,” I said, explaining that if they use my Seeing Eye dog’s fake name to say hello, Whitney wouldn’t look their way and get distracted from her work — she wouldn’t realize they were talking to her.

I asked the kids what their principal’s name was. “Mrs. Brett!” they called out. “Does anyone know Mrs. Brett’s first name?” I asked. After a moment of silence, one sweet little voice rang out. “I do! It’s Eileen.” And so, it was agreed. The kids would call Whitney by her code name: Eileen.

Most of the questions during the Q&A part of the session had more to do with blindness than dogs:

  • Your dog is really cute. Do you know what she looks like?
  • How do you drive, I mean, like, can you?
  • How do you know what to wear?
  • Did you ever bring your dog to the vet and then he had to stay in the hospital?
  • How do you get in and out of bed?
  • Do you ever even get into a car?
  • Do you know what made you blind?
  • Isn’t it hard to get around when you can’t see?
  • Does it ever make you feel sorry being blind?

I tell kids at school visits they can ask me anything. I promise to give an honest answer, so when that last question was asked I had to say yes, sometimes I do feel sorry being blind. “Not right now, though,” I was able to answer sincerely. “Just being here with you guys, hearing your smart questions? That makes me feel happy!”

 

Why I Left It Up to My Daughter to Choose Her Halloween Costume

Bernhard's daughter, Elena, outside and smiling with her arms out wide

Bernhard’s daughter, Elena

Last week at school my phone notified me that my tiara and stuffed 18” horse were arriving. Having them delivered to work was a poor choice. How in the world was I supposed to sneak these into my car without any of my colleagues knowing?

As I mentioned in my Easterseals blog post last year, I have always chosen Elena’s Halloween costume for her.

Transforming her wheelchair into a bulldozer or a full on stove was creative and fun, but they were my choices, not hers. I was creating these costumes for my own enjoyment rather than supporting her independence.

So this year I left it up to Elena to choose her costume. This one is all on her.

Because Elena is nonverbal, she uses eye gaze technology to communicate. That, or she looks up for yes or to the side for no. As we were sitting around after dinner one evening, I asked her what she wanted to be for Halloween. “A card dealer at a casino?” I asked.

“No.” Elena replied quickly and clearly.

“I could go as the Beast, and you could be Belle from Beauty and the Beast?”

A noble idea that peaked her interest, but no sale. Eyes to the side.

“A basket of dirty laundry?”

Elena responded with a look of disgust and fear.

Reluctantly, I finally asked the question I didn’t want to. I already knew the answer. “Would you like to be a princess?”

Her eyes shot up, she shared an enthusiastic smile, and her body stiffened with excitement.

OK, now we had an idea, but we needed to get a little more specific. After a full summer of Moana, I was hoping that she would draw some inspiration from that character: a strong figure, and her happiness isn’t contingent on a man. Rather, she finds her own individual strength and identity.

But no. Bust out the glass slippers instead. Elena chose the princess of all princesses: Cinderella.

Halloween has meant so much to us over the years because it’s about making a spectacle of yourself. As a parent of a child with a very visible disability, we make a spectacle of ourselves wherever we go. Whether it’s to the grocery store, shopping at the mall, or eating a meal, people look at us. We attract looks, smiles, and stares. It’s never mean-spirited or cruel, but mostly a warm smile or curiosity. We’re certainly used to it by now, but I often wonder how Elena might respond, and every year Halloween gives us the opportunity to embrace the spectacle and have others be part of it.

So, I spent last weekend reluctantly putting Christmas lights on Elena’s wheelchair and mounting the horse on the front so that it looks like a horse-drawn carriage. Today we are all celebrating that this year, it’s Elena’s costume…and we’re enjoying another spectacle.

More posts from Bernhard about Elena:

 

Scrambling to Prepare for Halloween? Look No Further!

String lantern lights that look like jack-o-lanternsThe chill in the air, crunchy leaves on the ground, and ubiquitous pumpkin everything can only mean one thing…. Halloween is nearly here!

If you’re a serious Halloween aficionado then you’ve probably thought long and hard about your costume, searching high and low for the perfect pieces to pull together a look that will be talked about for years. But, if you’re like many of us just trying to figure out where summer went, then you probably feel the last-minute scramble to come up with a costume and a plan.

Fear not, though, because we’re here to help you prepare for this day of festive fun and self-expression. Check out these resources to make sure you’ve got all the information and inspiration you need this Halloween:

We wish you a fun, safe, and happy Halloween. If you have any more tips or ideas be sure to send them our way! 

 

How Do You Define the “Best City” for People with Disabilities?

For the fourth year in a row, the consumer finance website WalletHub has named the Kansas City, Missouri, suburb of Overland Park #1 in a ranking of the best American cities for people with disabilities. San Bernadino, California came in at last place, #150.

The site says it bases its rankings on economic environment, health care, and accessibility. To help people find the best place to live and manage a disability, they review cities for everything from the number of physicians per capita to the rate of employed people with disabilities to accessibility to city parks and recreation.

Lists like these can be fun, and a ton of folks (including me) get drawn into reading them. I don’t think this one holds much value, though.

The term “people with disabilities” (PWD) is pretty broad. A PWD can be someone with age-related disabilities, a person who uses a wheelchair, a child with a developmental disability, a returning veteran with a traumatic brain injury – we all have very different needs. A very quick bit of research on Overland Park shows it has a strong public school system, (ideal if you have a child with a disability) and a weak public transportation system (difficult if you’re like me, and your disability prevents you from driving).

Chicago, where I live, ranked #7 on the list this year. Nine cities in Arizona made the list, and while people using wheelchairs wouldn’t have to deal with snow and ice in the winter there, those of us who use service dogs would have a hard time keeping them hydrated in the summer.

So for now, at least, I’m staying here in the Windy City. The availability of public transportation here lets me live more independently, the roads follow a grid system so it’s easy to know my way around without being able to see, and my Seeing Eye dog loves the cold. What can I say? It’s My Kind of Town!

How accessible is the place where you live? Let us know in the comments below!

More posts about accessibility:

 

Hidden Words: Emotions, Thoughts and Feelings in the Silence

Writer’s note: I can’t stress enough that, “If you’ve met one person with autism you’ve only met one person with autism” as it applies greatly to this post as these examples are mine and mine alone. Also, to some of these situations, on any given day, the words behind the words could be different…

A lightbulbA teacher once asked me, “Do you need any help?”

What I said: “No.”

What I was thinking: Why did I say no? I do need help, so why did you ask instead of just helping me? I know I need help but why don’t you? I just don’t get this, these fractions make no sense and the rules for inverting or, flopping, or whatever it is when dividing, or is it multiplying, makes no sense. Please come back, help me, but if you ask again I’ll probably say no.


Many times in my life I’ve been told, “Aaron that was a good job!”

I have often responded with a hesitant, “Yeah,” and with a halfhearted, “Thanks”

What I’ve thought: Was it a good job, really? I know I could’ve done better because it wasn’t perfect. With that said, are you just telling me it was a good job or are you just telling me it to be nice because I know that’s what people do so I’m actually confused right now. If I seemed a bit stuck up after your compliment I had no intentions of seeming so, it’s just that I don’t know how to respond because I quite honestly have no idea if what I did warranted praise because I simply did what I did because it needed to be done.


In first grade he music teacher played something to show us what heavy bass felt like and I quickly rose my hand and said, “It is hurting me!” She responded with, “No it isn’t!”

What I was thinking: No it isn’t? Then what am I feeling? I can’t state that it’s hurting again because my classmates will probably laugh at me, but teacher, I’m feeling something I’ve never felt before. My legs and arms feel as if they’re on fire and I’m feeling every bit of noise. Why didn’t you believe me? Maybe someday I’ll be able to explain this, but for now I’ll just close my eyes and try and endure this onslaught of noise.


Many, many times in my life a loved one has told me, “I love you.”

My response is always the same, “…”

What I think: Oh my goodness, I’m silent again, but I do, I do love you, but I can’t say it. I don’t know why I can’t say it, but I do. In this silence is the struggle I face. For some reason expressing emotions just isn’t there but that doesn’t mean that I’m lacking in it.

Maybe it’s fear that someday I won’t hear those words; maybe it’s a fear of your reaction should I say it and this could be even more so because I haven’t said it for so long. This silence must be hard for you, I understand, and you may think you’re talking to a wall as I stare back at you in a blank stare, but I’d like to say so much but am simply unable.

I know I’m loved because you keep telling me and yet I keep responding with silence, but you must, I hope, know that I love you because you keep telling me and each time I wish I could reciprocate, but I hope you understand hidden within the silence, or the words I may sometimes say in brief, are many more emotions and thoughts than you can imagine.

I’m in here, I really am, but sometimes I just can’t tell you what I want, what I’m feeling, and that fact that I truly appreciate you and all that you are and all that you’ve done for me.

Aaron Likens on a sailboatAaron Likens, author of Finding Kansas: Decoding the enigma of Asperger’s Syndrome, and the National Autism Ambassador for Easterseals, has spoken to over 80,000 people at over 900 presentations and has given to the world a revelation of how the Autism Spectrum Disorder mind works. His willingness to expose his inner most thoughts and feelings has unveiled the mystery the Asperger’s mind. Join him on his journey from hopelessness to hope.

More posts from Aaron: