Message From the New CEO: A Look Ahead

Angela F. Williams

Easterseals and its clients nationwide reached incredible milestones in 2017! Our entire network strengthened its resolve to protect services for people with disabilities while expanding programs that impacted the lives of nearly 1.5 million people with disabilities including veterans and seniors, as well as their families.

Seeing these successes reaffirms how vital it is that Easterseals continues to make a lasting difference in people’s lives. Because we were there for them, our clients were able to achieve their goals – and set new ones. As we begin 2018, we are inspired and committed to create even more opportunities to assure that people with disabilities, including veterans and seniors, can live, learn, work and play in their communities.

As I join Easterseals’ national office as its President and Chief Executive Officer, I am honored and privileged to lead this life-changing organization, especially as we prepare to celebrate our 100th Anniversary in 2019. The need for Easterseals has never been greater! More people today are living with disability. As the nation’s leading disabilities advocate and service provider, we are driven to achieve our vision of a world that embraces and values people with disabilities – and one that assures they have access to the services and supports they need in their communities to reach their full potential.

I look forward to sharing our plans, work and successes with you in this blog throughout the coming months. I also welcome hearing the ways in which Easterseals could help you and the ones you care for.

Until then, as one of my first official acts as President and CEO, I testified  Thursday, January 18th to the House Subcommittee on Veterans Affairs. As a veteran, I am proud to share with Congress the impact that Easterseals is making in the lives of homeless veterans, delivering employment services for which we are distinguished, to help them find meaningful employment – often the first step in successful reintegration to their communities. In partnership with other community-based organizations, as well as the Departments of Veterans Affairs (VA), Housing and Urban Development (HUD) and Labor (DOL), Easterseals is a leader at the national and local levels in responding to the needs of veterans and their families – and the Homeless Veterans Reintegration Program about which I testified is just one example of the impact we’re honored to make in the lives of our nation’s heroes. I hope you watch my testimony here.

I look forward to getting to know you better. Together, I know we can make a difference!

Learn more about our new President and CEO here

 

Beam Us Up, Scottie: The Future is Here

An iPad next to an iPhone against a marble background“Alexa, desk light on.”

The bedside lamp clicks on and illuminates my room in a warm glow. So begins my day as a disabled woman assisted by smart tech. From the moment I wake up, technology makes daily tasks easier for me and my caretakers.

I’m old enough to remember when cell phones were huge, gray blocks with a long antenna. When I was a kid, the internet was not a staple in homes or in public spaces. Controlling the lights in my room with only my voice, and communicating with people via voice-to-text and FaceTime was something I thought could only happen on Star Trek.

Alexa is Amazon’s version of Siri, a voice-activated digital assistant that can link with smart devices like light switches and other electronic items. Alexa is also paired to my phone, and I can easily turn lights on and off either by saying a command aloud or tapping the iPhone screen. I also use Alexa to stream music, read the latest news, make phone calls, order pizza (if I’m so inclined), and turn on my space heater. There are many other tasks she can perform that I haven’t tried out yet — Amazon is constantly adding new features.

Alexa’s formal name is the Amazon Dot, and Google has released a similar device called Google Home Mini. The Dot is an Amazon product and is extremely tied in with Amazon and all its services, and the Mini is tied into Google.

The advance smart home technologies highlighted at this year’s Consumer Electronics Show (CES) made Star Trek seem like a reality show. From refrigerators with large touch screens that tell you if you’re running low on milk to voice-controlled showers and bathtubs, CES 2018 showed us devices that could greatly benefit disabled individuals and their caretakers.

Someone with chronic pain won’t have to move as much to reach faucets or switches. Voice reminders and automated grocery lists can help those with memory loss. Mentally ill folks can activate calming music or order food without using up many figurative spoons. Smart tech can radically change the lives of disabled people, and the impact can be great.

You may have noticed my use of the word “can” in the previous sentence. I say it “can radically change,” rather than it does or it will, because these smart devices are usually a financial impossibility for disabled folks living on Social Security (SSI) wages. I would even say the smart refrigerator, for instance, is out-of-reach for most middle-class families. Amazon’s Echo is on the affordable end, but you then have to purchase smart plugs to get the most out of its accessibility features. I’m guessing costs related to the Google Mini are similar.

I worry that, as technology advances, the financial disparity when it comes to disabled people will leave them unable to keep up. Accessibility also means affordability. So often we can’t access the tools to improve our lives because they are behind a paywall.

What’s the solution? It’s complex. It involves looking at the very foundation of our sociopolitical system. But I think it’s a conversation that needs to happen if we are to see this tech available to all, especially those who are disabled.

More posts about technology and accessibility:

 

Breaking Barriers: Dr. King’s Speech Lives In Me

Dr. Martin Luther King Jr.

by Vilissa Thompson

Dr. Martin Luther King Jr.’s “I Have a Dream” speech was a pivotal moment for the Civil Rights Movement, and has influenced generations long after that historical moment on the National Mall.  To watch videos and view photographs from that day and to hear his strong voice declare the dream he had for this country truly sends chills down one’s spine.  Dr. King was a masterful speaker, and that speech solidified his importance to not only civil rights, but being considered a leader throughout the world because his message was universal to all.

Growing up post-Civil Rights Movement era, I learned from an early age how significant Dr. King’s legacy was to not only African Americans, but to all Americans who fought tirelessly to ensure that all people had the same basic human rights.  Dr. King’s speech showed us that it’s okay to dream of a world that may not exist at that moment.  During that time, African Americans, women, people with disabilities, immigrants, gays and lesbians, and the poor were fighting for a place at the table of equality when they’ve been historically denied, discriminated against, and mistreated because of what and who they were.

Dr. King’s speech told us that dreaming is the way for us to envision a world that, if we work together, can become reality.  Dr. King’s speech was for equal rights and opportunities of everyone; to be judged by the content of your character and not from what made you different from your neighbor or the majority.  Though Dr. King did not his dream take form during his lifetime, we have been fortunate to experience his dream 50 years later.  Though there still remains a long path for us to travel for all to be judged by our character alone, the fact that Dr. King’s speech helped us to begin on that path is undeniable.

Dr. King’s speech lives in me as I make my way to fight for equal opportunities and justice for people with disabilities in America and abroad.  Being a triple minority – African American, female, and disabled – I know that there are obstacles in my path because of the prejudices that some hold about the groups I’m a member of.  Being aware of those prejudices doesn’t make me anger; it makes me proactive and passionate about spearheading change.

I’m proactive about getting the voices of minorities and women with disabilities into the consciousness of society.

I’m proactive about being politically active so that I can demand that those who serve as politicians hear the voices of the voiceless in our society.

I’m passionate about shattering glass ceilings of what disability looks like by pursuing my education, being an entrepreneur, being politically involved, being an aspiring children’s picture book author, and ensuring that my voice and experiences are heard and respected.

I’m passionate about being a leader and history maker, and not being viewed as a victim because I’m disabled.  I’m only a victim if I believe that’s what I am.  I want to urge others to view themselves as powerful and as victors because no one can take away your importance or power without your permission.

Needless to say, Dr. King’s dream resonates deeply within me and the work that I set forth to do.  How does Dr. King’s dream live within you?  I would love to hear your own accounts of what today’s remembrance of the speech and march on Washington means to you and your dreams.

Vilissa Thompson is a macro-minded social worker from South Carolina. Ramp Your Voice! is her organization where she discusses the issues that matters to her as a Black disabled woman, including intersectionality, racism, politics, and why she unapologetically makes good trouble.
Twitter: @VilissaThompson, @RampYourVoice, & @WheelDealPod
Website: rampyourvoice.com

 

An Accessible Evening At the Movies: Part 2

Here’s Alicia Krage, back with Part Two of her post about the challenges and joys of going to the movies with your boyfriend…when neither of you can see.

by Alicia Krage

Alicia and Joe sitting side by side on a beige couch

Alicia (left) and Joe (right)

We’d arrived very early at the theater, so we had time to sit in our seats, talk for a while and munch on our popcorn. It was about ten minutes before showtime when Joe decided we didn’t have enough popcorn to make it through the movie. He insisted we needed a refill.

I’d never done that on my own before, and neither had Joe.

The two of us spent a good five minutes bantering back and forth about how to make this happen, who was going to go get the refill, did either of us remember exactly where the concession stand was, should we go together, or does one of us need to stay back to save our seats.

And then, all of a sudden, I got this idea. I still had the number we called from the bus on our way there. How about we call them? By then the previews (not movie previews, but the weird entertainment stuff they have beforehand), had already started. Would anyone be around to answer? Even if they did, these previews are loud, would they even hear us over the phone? If they answer, what should we ask for? How could they help us? Who should make the phone call? Me? Or Joe? And do we really, really need a refill?

What can I say? My boyfriend is very persistent. So I called the theater and explained what seats we were in. “We’re both blind,” I explained. “And we need assistance.”

The voice on the phone was the same friendly voice I heard when I called earlier from the bus on our way to the theater. And you know what? It worked! Within a few minutes someone was there and more than happy to refill our popcorn for us.

Now, let’s get to the movie. I can confidently say now it is one of my all-time favorites, but don’t worry: there are no spoilers.

In case you didn’t know, though, this movie is based on a novel called Wonder. It was written by R.J. Palacio and tells the story of August Polman, a boy who was born with facial differences. Augie had been homeschooled up until fifth grade, so in the movie he was starting public school for the first time.

The audio description Joe and I listened to in our headsets during the movie was amazing — they even described what Augie’s face looks like. While watching the movie I felt very fortunate that I was never bullied in school for being blind. But Wonder is not just about looks. It’s an inspirational film about accepting who you are, and accepting others, too. Nobody is perfect, and we need to see beneath the surface.

I was so moved by the movie that I was actually crying when the employee came to escort us out when it was over. Joe took the employee’s arm, I took Joe’s hand, and off we went.

As the three of us exited the theater side-by-side-by-side, the employee asked, “Did you enjoy the movie?” The humor in his voice told me he’d noticed I was crying. I smiled and wiped my eyes. “I did!” I said, a little embarrassed by my tears. “It was my second time seeing it. Have you seen it?”

By then I was back to my enthusiastic self — although I’m sure my face didn’t look very enthusiastic. He said he hadn’t seen it yet, and I recommended it to him. I love chatting with people as they’re guiding me (or both of us, in this case). I don’t like to walk in silence.

While Joe and I waited for our bus home, he kept talking about how much he loved the movie, but of course he also took up right where the theater employee had left off, teasing me about crying during the film. All in all, though? It was a wonderful experience!

More posts from Alicia:

7 Advantages of Being Blind

How One Student Who is Blind Planned the Perfect Date

“Dating someone who is blind is honestly not as hard as it sounds”

 

The Top 10 Easterseals Blog Posts of 2017

Easterseals national logoFrom beginning to end, 2017 was a year packed with landmark moments, inspiring stories, impactful advocacy, and more! Throughout it all we’ve had thoughtful and insightful blog posts from a wide range of perspectives on topics relevant and important to all that happened this year. Check out the most read blog posts of 2017 and let us know in the comments what you’d like to see us writing about in 2018!

1. Stricter Rule for Service Dogs Goes Against the ADA

2. Losing Friends to Ableism

3. Medicaid is My Lifeline

4. Hamilton to be Sued for Accessibility, But is it Reasonable?

5. Asperger’s and Employment: What I Wish I Knew Then

6. What Happens When My Thought Process is Interrupted

7. A Group for Adults with Disabilities Gathers for Fun, Friendship

8. These 68 Companies Score High When It Comes to Disability Inclusion

9. How Asperger’s Syndrome is Like a Checkered Flag

10. Here’s Who Loses Out if Medicaid Funding is Cut

 

An Accessible Evening At the Movies: Part 1

Easterseals National blog readers might recall a guest post Ali Krage wrote for Valentine’s Day about dating someone who is blind. Lucky us — she’s back with a new post about the challenges and joys of going to the movies with your boyfriend…when neither of you can see.

Ali and Joe.

Ali and Joe.

by Alicia Krage

When it comes to my blindness, one of the most common questions I get asked is, “How do you watch movies?” This is typically referring to how I go see movies at a movie theater.

Movie theaters provide audio description, which describes the movie when there is no dialogue. The description comes through a headset, so it’s not like the entire movie theater is hearing it.

A lot of movie theaters I’ve gone to over the years have given me the device for people who are deaf — that device enhances the sound and provides closed-captioning. The theater my boyfriend and I go to in our college town here in Illinois is great, though. They have never made this mistake. So ever since Joe and I started going to AMC Market Square 10 in DeKalb, I’ve enjoyed going to movies.

When I go to movies, I usually ask my mom for recommendations — she goes to movies way more than me. This time, though, I didn’t need a recommendation. I went and saw a movie I’d already seen!

My family and I went to see Wonder the day after Thanksgiving, and I loved it so much that I immediately texted my boyfriend when I got out of the theater.

I just saw the most amazing movie.

All iPhones come with an app called VoiceOver — the embedded voice synthesizer says each word I type out loud when I press space, so I can hear any errors as I’m typing. I explained the movie to him in short detail before adding three words.

Next movie date?

Joe’s enthusiastic reply came one minute later.

Sounds perfect!

Finals week was approaching. It was difficult to find time between our busy schedules, but one Saturday we took the bus over to the movie theater. One of us always calls from the bus to give them the estimated time we should be arriving and to inform them we’re both blind. I tell them what movie we’ll be seeing and inform them we’ll need assistance retrieving our descriptive audio devices for that movie as well as getting popcorn and whatever else we want at the concession stand. My phone call is always met with a very friendly, “No problem.” We are always met by someone waiting for us when we enter. Every single time.

And so it went on the Saturday we arrived to see Wonder. The manager said hello to us in that tone of voice where you know without them having to say it that they recognize you. We don’t go to the movies all that often, but it seems we are two familiar faces anyway. I could tell how enthusiastic Joe was about seeing this movie by the excitement in his voice at the ticket booth when he said, “Two tickets for the movie Wonder.”

The manager led us over to the concession stand and told us he’d go test the devices while we ordered. I kindly replied, “Please make sure it’s the device for the blind, not the audio enhancement devices.” I always say this a few times, just to make sure I’m getting what I need. The manager assured me he would, and we stayed at the concession stand to order what we wanted. The employee working the concession stand helped with our drinks and put the butter on our popcorn for us. (See? They really go above and beyond here!) When the manager returned, we had another conversation.

  • Me, just to clarify: These are the descriptive audio devices, right? It’ll describe the movie?
  • Manager, sounding confident: Yes.
  • Joe, as per usual: And it’s already on?
  • Manager, again confidently: Yes!

We know exactly what questions to ask. Teamwork! The manager led us to our seats in the theater, and going along with the script, I asked, “Can someone please escort us out when the movie is done?” We were satisfied once again when we received the reassuring answer, “Yes.”

Stay tuned for Part Two, when Alicia and Joe need a popcorn refill and Alicia’s resourcefulness saves the day.
Bonus: Alicia gives us a review of the movie Wonder from her point of view.

More posts from Alicia:

7 Advantages of Being Blind

How One Student Who is Blind Planned the Perfect Date

“Dating someone who is blind is honestly not as hard as it sounds”

 

Make This Your New Years Resolution For 2018

A person holding a sparklerIt’s that time of year once again when people make New Years resolutions.

What’s mine? Well, I have to admit that I’m not one to make any.

Since my early days in school I’ve never understood them. To me, they made no sense because a resolution would be set and by the second week in January they’d be forgotten. Sound familiar? To those that carry through their resolutions I say congratulations!

But this year, I found a resolution that will work; a resolution that we could, and must, carry out.

If you’re reading this you more than likely know, or love, a person with a disability and while we’ve made great strides over the past decade we must not rest on our laurels. The moment we let up our collective voice will begin to diminish and the awareness and understanding we’ve worked so hard to reach will begin to subside.

What does this all mean? Create a resolution to be a voice, or to be the advocate, or to be the educator when the time arises.

Each of you will have a different encounter over the course of the year, but if each of you carry through this resolution to just one person then there’s a chance that one person will reach one more and so on and so forth.

We can do this! 2018 is almost here and we have to keep the momentum we’ve gained. We can’t allow ourselves to think we’ve done all that is possible to be done. There are still so many waiting for that glimmer of hope, understanding, or the knowledge that they aren’t alone. We truly are in this together. Let’s make 2018 a year where our collective voice is louder than we can imagine and that the strides and progress we’ve made continue.

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:

 

My First Christmas With a Disability

Gifts under a treeYou know my story: the spots first showed up when I was 25. I began to notice dark patches in my vision and a lot of blurriness. “You have retinopathy,” the eye specialist told me. Laser treatments and eye surgeries didn’t help. A year later, I was blind.

After three months at a residential facility where newly blind adults learn daily living skills, I was able to go home for the holidays. Christmas of 1985 marked my blind debut to the entire Finke family.

Before then, holiday conversations had focused on everyone’s latest adventures. But this year, I was sure things would be different.

Our family is large — I am the youngest, with four older sisters and two older brothers — and our tradition is to give a handmade gift to the person whose name we draw out of a hat. I wasn’t let off the hook that year, despite my hospitalizations and ongoing rehab. When it was my turn to give my Christmas present, I proudly held out the gift I’d made and wrapped myself: a wooden box designed and assembled in my home maintenance class at the residential facility. I was proud of that box, and eager to talk about how I’d made it myself.

One of my brothers-in-law asked, “Someone else cut the wood for you, right?” I indignantly replied, “No!” But he persisted: “Really? How did you measure the wood? How did you cut it? You didn’t use a saw, I know that!” I started explaining how a Braille ruler works. But by then I’d already lost my audience to another conversation.

But eyebrows up! The rest of the day felt like any other Christmas. My blindness took a backseat to the usual Finke Christmas chaos. After dinner, I spent the rest of the evening as always, camped at the dining room table, drinking coffee and laughing with my sisters.

Later that evening, my husband Mike asked if it bothered me that no one had checked in on how I felt. I felt fine. My family has always focused more on practicalities than the emotional stuff. Aside from my brother-in-law’s disbelief that I could use a saw, my blindness and my feelings were not the focus.

Between interruptions to ask “You need anything?” on their way to the kitchen, family members were happy to let me sit back, listen to the music of the conversations surrounding me, and decide on my own when to join the chorus. Homemade gifts were opened one by one and, just like always, described out loud. That Christmas, my family treated me more or less like they always had. They helped me believe that I was still . . . me.

Over the years, I’ve learned more about what my first blind Christmas was like for my family. My brother Doug told me that he’d been afraid to talk to me, worried that he would say the wrong thing — although in the din of Christmas cheer, I never noticed his silence. Doug is a professional musician, and some years later he drew my name for Christmas and wrote me a song. The lyrics mention my blindness, but only once. But my favorite line is repeated in the refrain, in which he calls me “charmingly annoying.”

I think we’re back to normal.

This year I picked one of my nieces’ names out of the hat. She will receive something big I made this year. You guessed it: a copy of Aunt Beth’s latest book, Writing Out Loud.

Merry Christmas and…thanks for listening.

*The original longer version of this story was recently published on OptionB.org, where you can find it and other stories of resilience.

More holiday stories:

 

When Your Dream Accessible Home is Financially Inaccessible

Elena next to a Christmas tree

Elena in her new accessible home.

Late last month my wife and I celebrated our eleventh wedding anniversary. That year, 2006, was also the year we bought our first home.

We loved that house, a modest three-bedroom 1-bathroom stucco home with beautiful red oak floors. The tiny kitchen needed some serious updates, but we knew we’d get to that soon enough.

And then Elena was born.

We never did get around to kitchen renovations. Our daughter has quadriplegic cerebral palsy, and as she grew, our beloved house could no longer serve our needs as a family: the bedrooms and bathroom were all on the second floor.

We contacted a realtor, explained our needs, drafted a plan to sell the old home, and told the agent what kind of house would be appropriate for our family. Ideally, a ranch style or bungalow that would accommodate a wheelchair, gait trainer, stander, and a high/low chair.

“Well, I have the PERFECT home for you!” our real estate agent explained that the ranch was owned by someone with special needs. It had an accessible bathroom. Even an elevator! We hopped in the car and drove right over to the house. Our real estate agent was right. The house was perfect. Cutouts underneath the sink to accommodate a wheelchair. Grab bars. Wide hallways. Hardwood floors without any seams or ridges.

And that working elevator! Elena could descend to street level — as well as the basement — without being carried. Only one problem. Our dream house was also disgustingly and tragically out of our price range. It would have been irresponsible to even entertain making an offer.

What a depressing reality that was. Our dream accessible home was financially inaccessible to us.

So, the house sat, languished, and collected spider webs. All I can figure is that people walked into a mid-century ranch and wondered, “What would I need an elevator for?” How much would it cost to have it removed? This is going to cost me.”

A year-and-a-half went by. No viable offers. No movement. Yet still inaccessible to us financially.

As the fall market began to wind down the year before our daughter began kindergarten, the house’s price was reduced. If we sold this, leveraged that, and stopped spending money on anything else, maybe we could swing it.

My heart started pounding as if I were about to go on stage. I snatched my phone, called my realtor and announced, “The price just came down!” She laughed with joy and said she already knew. “I was just about to call you,” she said. “Let’s move now!”

I’ll spare you the tedious details of the closing and get right to the good part: we were able to purchase our dream home! We’ve been there almost two years now and are so very thankful to the family who lived there before and made the extensive renovations to the home. We hope they know what a monumental change that house has made in our lives. Their hard work continues to be put to good use –the house contributes to our daughter’s independence and happiness.

We are two blocks from her school and with the help of the elevator she descends to street level and goes to school with the rest of the first graders who live on our block. We’re all extremely lucky and grateful.

Read more stories from Bernhard:

 

What Does It Mean to Advocate For Yourself?

A microphone in focus with an auditorium in the background, out of focusBefore I started giving speeches across the country about autism, I had no idea what “advocating” meant. The years went on but the idea never fully clicked. But that all changed with a single question.

“My daughter is being picked on and bullied in school. What would you say she could do?”

The question came from a mother during a question-and-answer segment of a presentation I was giving at a university. The daughter was with her, so I turned my vision towards her and took a breath and all of a sudden the concept of advocating made sense.

“School was rough for me, but I never was truly bullied that I know of but I have had situations where I felt belittled and mocked. This isn’t to diminish your challenge now but you’re seeing me up here on this stage today advocating. I may have spoken to tens of thousands but that isn’t the goal here. I’ve had instances where a one-on-one conversation made a drastic change and that’s the goal. My job title may be Autism Ambassador but really anyone and everyone can be one. Your story isn’t my story and my story isn’t yours and that’s what the world needs to know about the autism spectrum.

“To those that bully you all I can say is try and advocate for yourself. Make the attempt to explain to them who you are and why you are. Will it work every time? I’d be telling a lie if I told you it would, but here’s the thing; if you reach one person (yes, if you reach just one person) then maybe that one person reaches another that reaches another and what all this means is that you changed the world! Again, some people aren’t going to listen, some won’t care, and should this happen you’ll have to try again down the line but don’t lose hope. I believe that most people are good and want to learn and you have the power to do exactly what I’m doing today.”

My voice was quivering when I finished that answer because I realized that what I said wasn’t just a filler answer but the honest truth. Anyone and everyone has the ability to change the world and it doesn’t matter if it’s to an entire student body or to one fellow student.

Later on, the woman found my Facebook page and mentioned that the bully in question apologized to her daughter and was now sticking up for her!

This is the mission, this is the goal, and whether you’re a public speaker, a blogger, a parent, a student, or anyone that has any slight affiliation to the autism spectrum you have the ability to change the world. Truly, you do and if we want to get to the world where there is full awareness and more importantly understanding of the autism spectrum it’s going to take us all to advocate, to educate, and to generate the thoughts in others that will make more stories like that of the daughter that was in my audience.

We’re in this together and as I told that girl in my audience we won’t always have someone that will listen, but it only takes one for us to change the world.

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: