A musician’s song for his son with autism

The Decemberists' Colin Meloy singing "Rise to Me"

The Decemberists’ Colin Meloy singing “Rise to Me”

I love The Decemberists. Who can argue with a band that has accordion, pedal steel guitar, and upright bass? I like the band’s originality. I like their complicated lyrics. I even like lead singer Colin Meloy’s unapologetically nasal voice, especially in the song “Rise to Me”.

In an interview with Time Magazinepublished after Colin Meloy’s son was diagnosed with Autism Spectrum Disorder — The Decemberists’ frontman said he wrote the song “Rise to Me” on The King is Dead album for young Henry. The lyrics are particularly moving during April — Autism Acceptance month:

Hey Henry can you hear me?
Let me see those eyes
This distance between us
Can seem a mountain size
But boy:
You are going to stand your ground.

When the Time reporter asked about the song, Meloy said, “It’s chronicling our feelings as a family and the sort of face that we have to put on to remain sane.” You can listen to “Rise to Me” on YouTube — see what you think.

 

Providing help, hope, and answers to people with Autism Spectrum Disorder

World Autism Awareness Day is tomorrow, April 2, 2016.

World Autism Awareness Day. An illustrated Earth with people holding hands around it.

World Autism Awareness Day is observed on April 2.

I’m marking the occasion a day early to let you know about the Autism Spectrum Disorder services and treatments Easter Seals makes available to families living with ASD. A number of wonderful organizations research and study the cause and cure for ASD — Easter Seals stands out as the nation’s leading provider of services and support for children and adults living with ASD.

Our Living with Autism Study is one example. That study provided us with quantifiable information about the services and supports that families living with ASD desperately need. Parents of children with ASD are struggling with a host of worries that impact every aspect of their lives. They are particularly concerned that their family will lack the life-long supports needed to address the significant challenges of Autism Spectrum Disorder.

Results of the study revealed parents raising children with ASD were very concerned about the future independence of their children. In fact, they were far more concerned than parents of typically developing children — nearly 80 percent said they were extremely or very concerned about their children’s independence as an adult, compared to only 32 percent of parents of typically developing children. This was especially true when it came to their financial independence, quality of life, social and interpersonal connections, and employment and housing opportunities — and with good reason.

The study quantified what Easter Seals has heard anecdotally over the years. The one consistent message Easter Seals hears from the families we serve — after the initial apprehension and anxiety of learning their child has ASD — is an overwhelming concern about the life-long supports their child with ASD may need.

More than a generation ago, Easter Seals was front and center during the polio epidemic, working tirelessly to help children and adults with polio gain the skills necessary to live independently. And now, Easter Seals is working internationally to provide help, hope and answers to families living with ASD today by delivering personalized services and treatments, as well as advocating with government to encourage financing for research and improved access to services and supports for people with ASD.

Every family living with a person who has ASD faces unique challenges. Early detection and intervention are the essential first steps. There is an urgent need for increased funding and services — especially for adults with ASD.

We want to help change all of this and make a difference for families living with Autism Spectrum Disorder today. Help us change the lives of people living with ASD by becoming a volunteer or a donor. To learn more about autism, read the findings of the Easter Seals Living with Autism Study, and find services at an Easter Seals near you.

 

“I want you to see more than just my blindness”

If you haven’t signed up to follow BlindBeader’s Life Unscripted blog yet, I highly recommend you do. BlindBeader is a gifted young writer who lives in Edmonton, Alberta, with her husband, 3 cats and guide dog Jenny. This past week a video in honor of World Down Syndrome Day narrated by a young woman who has Down Syndrome (and portrayed by an actress named Olivia Wilde, who does not) motivated BlindBeader to write a post on Life Unscripted about how she herself would like to be seen by others. You can read BlindBeader’s post in its entirety on the Life Unscripted blog – for now, here’s an excerpt.

Do you see me with vision?

by Blindbeader

Blogger BlindBeader and guide dog Jenny waiting for a water taxi during a visit to NYC.

Blogger BlindBeader and guide dog Jenny waiting for a water taxi during a visit to NYC.

I am a woman with a disability. As such, I face many reactions from the general public. It would be a lie if I said these comments and impressions don’t affect me, because they do, no matter how I try and fight it.

Not only do they affect how I see myself, they ultimately affect my livelihood and ability to be autonomous and self-sufficient. So, in a way, I want people to look past my disability, to allow me to make mistakes or succeed on my own merits as a woman, not just settle for “good enough” because of the perception that I can’t do any better because I have a proverbial scarlet D for Disabled tattooed on my forehead.

And yet, I have no desire to hide my disability. This is partly because it’s not possible for me, but it’s also because I feel like I need to live the best life I can — a vibrant, complex, nuanced, full life with blindness — in order to be happy and to embrace all of who I am. The comments and questions and seemingly constant advocacy aren’t ever going to go away, so as I see it, I have two choices:

  1. run and hide and let everyone else fight battles for me, or
  2. prove again and again that there is nothing shameful about being blind, and in fact it has its own advantages.

To ignore my blindness completely is to ignore the one thing in my life that has made me as strong as I am while simultaneously bringing me to my knees.

Actress Olivia Wilde, who does not have Down Syndrome, looking in a mirror. This is a screenscrab from the "How Do You See Me?" video referenced by BlindBeader.

Actress Olivia Wilde in the video titled “How Do You See Me?” for CoorDown’s World Down Syndrome Day campaign.

I want you to see more than just my blindness, to view me as a friend, an employee, an athlete, an entrepreneur, a customer… a human being. Talk to me, and anyone with a disability, as though your comments were directed back at yourself; realize that we are more than just people whose eyes don’t work or who don’t hear well or are unable to walk at all or without significant pain. We share your humanity, enjoy some of your hobbies, have opinions about religion or politics, have hopes and dreams and desires for our lives.

But you don’t need to tiptoe around us, either. Don’t ignore our disability; it is still a part of who we are. In ignoring it, you are in effect not acknowledging the discrimination that we face and the pain and anger that engenders, and can’t truly get to know the completeness of our lives by truly celebrating our successes or picking us up when we’re feeling down.

Do you see me as a woman, with dreams for the future and hopes for tomorrow? A woman who likes hockey, loves running, and makes pretty beaded things? A woman who drinks too much coffee, loves the sound of a recent snowfall, and sings at the top of her lungs when no one’s around to hear her?

That’s great! You see a big part of who I am. Do you see a woman whose eyes don’t work right, who puts labels on her canned goods in her pantry, who navigates the world with a guide dog by her side? A woman who is happy and content with her life, blindness and all, who wants to kick down doors and break down barriers? That’s another part of who I am. You can’t separate one from the other, and yet in a way I need you to.

If all you can see is what doesn’t work (my eyes), then you’re missing out on a wicked Scrabble game, a loyal employee, or someone who will cause you to rethink your view of the world. And if you act like my blindness isn’t there, or is scary and uncomfortable, you’re ignoring a true reality of my existence.

Put the pieces together, take them apart. See me completely, because I can’t envision myself as one person without the other keeping me company.

 

How a simple ‘tap’ made for a great day

Beth lounging on a ruby red couch shaped like lips, with Seeing eye dog Whitney standing in front of the couch.

There I am lounging on a ruby red couch that’s shaped like lips – an example of the pop art described to us at the Museum of Contemporary Art Chicago). Seeing eye dog Whitney wasn’t allowed on the couch.

One good thing came from the fall I took in December: Breaking my hand convinced me to apply for a Taxi Access Program (TAP) card.

The TAP card gives taxi discounts to Chicagoans whose disabilities make it difficult to access regular public transportation. Just “tap” the card on a screen in the back seat the same way others tap their credit cards and receive a discounted ride (taxi drivers are reimbursed for the remaining cost by the Regional Transit Authority).

My pride prevented me from applying for a TAP card before. I felt perfectly capable of taking a regular Chicago Transit Authority bus with my Seeing Eye dog Whitney to the memoir-writing classes I lead in Chicago. That was until it started to snow and was difficult to get to the bus stop. And then I fell and broke my hand. I wore a cast for six weeks. I started to think, gee, maybe those cards are intended for people like me!

Beth at the bus stop

I won’t stop taking the bus–at least when the sidewalks are all clear.

I called the Regional Transit Authority to apply, they sent reams of paperwork, my husband Mike can see and helped me fill the forms out, we mailed them in, the RTA called me for a phone interview, they set up a time for me to come to their office in-person, I arrived at the RTA office and answered more questions, Whitney led me to a bus stop, and an RTA staffer trailed behind to watch us step onto a bus. All this to see whether I’m “disabled enough” to qualify for a TAP card.

I don’t berate the RTA for putting me through all those hoops. I blame the scoundrels who fake or exaggerate their disabilities to use service animals, park in handicapped parking spots, and get cab discounts. In the end, I passed the audition. Or, I guess I failed: I qualified. My TAP card came in the mail last week! Perfect timing, as I needed it on my totally blind day Wednesday:

  • 10:30 a.m. Used TAP card for cab ride from our apartment to Museum of Contemporary Art Chicago (MCA)
  • 11:00 a.m. Attended first ever special hour-long tour at MCA for people who are blind or have visual impairments
  • Noon Reviewed tour with MCA staff and shared suggestions and recommendations for the next special tour
  • 1:00 p.m. Phoned cab for pick up at MCA and ride to Chicago History Museum
  • 1:30:p.m. Attended first ever touch tour created by the Chicago History Museum for visitors who are blind or have low vision — it was a 90-minute highlights tour of a permanent exhibition called Chicago: Crossroads of America (can you believe both of these were on the same day?!)
  • 3:30 p.m. Reviewed tour with MCA staff and shared suggestions and recommendations for the next special tour
  • 4:00 p.m. A friend who met Whitney and me to join us on the Chicago History Museum tour walked with us to La Diosa to enjoy a delicious early dinner together — La Diosa owner and manager Chef Laura Martinez is, you guessed it…totally blind
  • 5:30 p.m. Called cab and used TAP card for taxi ride home.

My TAP card won’t work on Uber or Lyft or other ride-sharing services, but all the registered cab companies in Chicago accept it. If it weren’t for my new TAP card I don’t think I would have signed up for both of those tours in one day — I’d be too anxious about bus routes, getting to new bus stops, knowing what commands to give Whitney when we disembark — excuse the dog pun — at a new and unfamiliar corner. Thanks to TAP, last Wednesday I was able to help two museums fine-tune future touch tours, and I did it all by going totally blind.

 

Hard-fought changes to the Affordable Care Act

ACAThis week, Easter Seals is pleased to celebrate the sixth anniversary of the passage of the Affordable Care Act. This measure signaled a new commitment to making health care available and accessible, particularly for people with disabilities.

Easter Seals supports the changes included in the Affordable Care Act and, in particular, the insurance market reforms and affordability provisions.

“These were hard-fought changes,” said Randall L. Rutta, the President and CEO of Easter Seals, “but they are significant in the pursuit of affordable, quality health care for those who have had difficulty attaining or retaining insurance coverage in the past.”

By the end of the most recent open enrollment period on January 31, 2016, nearly 20 million people have gained insurance since October of 2013 through the Affordable Care Act. Easter Seals believes that the continuing goal of this effort is to assure that all people have access to quality, affordable health care that meets their individual needs. It is through these fundamental changes in the health care system that we can enable all Americans, including people with disabilities and chronic conditions, to be healthy, functional, live as independently as possible and participate in their communities.

Now, a parents’ insurance policy can cover an adult child with a disability until they are 26, a child can not be refused insurance coverage due to a pre-existing condition and lifetime limits on insurance coverage are prohibited. Access to appropriate and high quality health care services is essential for people with disabilities to live, learn, work and play in their communities.

This law opened a door to making that possible.

Join our legislative action network to have your voice be heard in Washington, D.C. along with Easter Seals’.

 

Who is DJ Mermaid?

art-little-mermaidMore about the 9-year-old guest blogger who has her eyes on the White house: the two of us worked so well together that after her guest post was published here, she asked her mom if she could take a writing class with me.

“Not sure how this could work,” her mom wrote. “But she has some time now if you do.” Turns out my young writer is home from school while they try a casting program — she has casts from her hips down to her ankles, on both legs.

I had time.

My Seeing Eye dog Whitney and I took a train from Chicago to visit her for our first class a few weeks ago. Now I give her a writing assignment every week, she emails her work my way when she’s done, I use my talking computer to read through her rough drafts, and every Friday we go over my comments and suggestions together. She makes the revisions she agrees with, emails the revised essays back to me, and…voila!

Her first piece was about coming up with a pen name:

The whole mermaid obsession started when I was about 2 — roughly. I was at my grandparent’s house and I was watching The Little Mermaid with my young aunt. Of course I immediately fell in love with Ariel, the youngest mermaid princess of King Triton. I loved her because at the time I couldn’t really walk and she couldn’t really walk on land either.

Her pen name? DJ Mermaid. When we got together to talk that week, I told her I approved. “DJ Mermaid,” I mused out loud. “It has a nice ring to it.” And come to think of it, President Mermaid rolls off the tongue pretty easily, too.

 

Future president asks, “Why do you need to know how I move?”

Future president (age 9) and her dad

Future president with her dad

Remember the 9-year-old who wrote a post here for Valentine’s Day about how much she loves her Dad? I met that guest blogger years ago when I was being treated for a rotator cuff injury. This girl was only 2 years old then, but she remembers visiting the clinic once when I was there and petting Hanni, my Seeing Eye dog. “She was soft!”

Years later I was flipping the radio dial and happen to come across a young girl talking with her aunt for a StoryCorps interview titled Future president doesn’t want to be defined by her disability. It was that same girl. The one I’d met at the clinic.

I emailed the StoryCorps star to let her know how much I enjoyed her interview, and that led to a visit to her public school to give a presentation there with my Seeing Eye dog. I approached her about writing a guest post for us in February and was delighted when she said yes.

After she sent the finished piece my way, I emailed her to let her know I’d be writing a short introduction for it. “Remind me –do you use a walker? A wheelchair?” I asked. “Without being able to see you, I don’t know.”

And here’s where that 9-year-old became the teacher. She wrote back with a question. “Why do you need to know about how I move? Because this is a Valentine’s Day post and it’s supposed to be about my relationship with my Dad.”

Good question, Madame President. I told her I needed to know how she gets around because the place I work –Easter Seals — is an organization that helps people who have disabilities. “So the posts are all about people who have disabilities, or legislation that involves people who have disabilities, or services or treatments that help people who have disabilities.” I told her I would totally understand it if she didn’t want me to mention anything about her disability in my introduction. “But if I don’t mention disability, it won’t really make as much sense to have it on the Easter Seals national blog.”

She thought long and hard about all this, and we worked on the introduction together. In the end, the introduction to her February post described her as an attractive 9-year-old who plays piano, writes stories, and loves to bake. “She has a physical disability that doesn’t stop her from doing anything she wants to do,” the intro says, and that’s absolutely correct! I was happy with the outcome, and even happier to learn a lesson in advocacy from a 9-year-old.

 

How my invisible disability effects voting and everyday life

I lead four memoir-writing classes for Chicago senior citizens every week, and 94-year-old Wanda Bridgeforth is in one of them. Wanda has had a significant hearing loss since childhood, but her hearing impairment was not detected until she was a young adult. Here she is with an essay about invisible disabilities, and how hers affected her schooling and her experience voting during elections in the past.

The whole class celebrated Wanda's (on my right) 94th birthday last year. Photo courtesy Darlene Schweitzer.

The whole class celebrated Wanda’s (on my right) 94th birthday last year. Photo courtesy Darlene Schweitzer.

by Wanda Johnson Bridgeforth

Diminished vision and limited mobility are evident and basically understood by most people, but hearing loss is not. I live with an invisible disability.

In my 94 years of life, I’ve never let my hearing loss prevent me from doing anything I want to do. That includes voting. My Grandmother was not allowed to vote in her home state of Mississippi. She didn’t vote in her first election until she was 80 years old and moved to Illinois. She was one of my life heroes, and in her honor I never miss an opportunity to vote in an election.

One time when I voted, the poll worker seated at the table asked my name. I answered, and she lowered her head to check the precinct register. Head still down, she said something I couldn’t understand.

I can read lips, but not when someone looks down into their chest when they talk!

When I asked her to repeat, she heaved her shoulders and mumbled some words. “I have a hearing loss and hear better when I can see your mouth,” I said calmly. “Would you repeat the question?” Between clenched teeth she asked, “What’s YOUR ADDRESS?”

I can read lips, but not when someone talks with their mouth clenched!

When I picked up my ballot at the end of the table, I looked back and saw her mouthing something about “that old senile deaf woman getting on her nerves.” As I was leaving the polls I looked directly at her, smiled and said in a very loud voice, “Thank you, have an enjoyable evening!” Others waiting to vote there applauded.

When I was a child there was little known or acknowledged about hearing loss, an invisible disability. Many adults considered me impolite when I didn’t speak to them. At drama club rehearsals I missed cues on my left side. Teachers made me stand in the hall because I was talking out loud and disturbing the class. That, or I was looking around the classroom when I should have been reading or writing an assignment. Trouble was, I hadn’t heard the teacher tell us that was what we were supposed to be doing.

Some parents forbade their children from playing with me because I wasn’t ladylike. They said I was uncouth because I laughed and talked too loud. I interrupted others. I often didn’t respond when spoken to.

For years I cried through earaches and wished I could reach inside my ear and remove the cause. Shortly after my husband was discharged from the army after World War II, I had an earache. He dropped sweet oil into my ear and applied heat liniment to the outside of the ear. The earache worsened. A friend recommended an ear nose and throat doctor in the Hyde Park neighborhood of Chicago.

When the ear was healed, that doctor gave me an audiogram. The diagnosis was a hearing loss in both ears. The doctor asked how I had gotten through school. I had no idea. I received high marks for academics, but low ones for deportment.

The doctor sent me to an audiologist who fitted me for a hearing aid. I remember my reaction of joy and tears when I first heard a dove cooing in our back yard.

Over the years, time and ear infections have taken their toll and my hearing has diminished to Legally Deaf level. I use a caption phone at home now. The screen lights when the phone rings. The number and name of the caller is printed on the screen. It prints out what the person on the line is saying and can store the conversation for further reference. It has a personal directory to store all personal phone numbers. With the volume control and the caption I can talk to all of my soft talking friends.

There is still much to learn about hearing and the function of the mini-microscopic bones of the ear. Thank Goodness research has made some progress and we are becoming more aware of the symptoms, causes and treatment of Hearing Loss, an INVISIBLE DISABILITY.

 

Help America Vote Act of 2002 sure helped this morning for Illinois primary

I Voted Today stickerI’d researched the issues. I’d studied the candidates. It’s a primary election, not a general one. Voting this morning should have been a breeze.

And you know what? It was! I voted on my own in the Illinois primary election today!

The Help America Vote Act of 2002 mandated that voting systems provide some way for people to vote independently and privately (including those of us with disabilities), but if you read the post we published here Monday, you know there have been many, many elections since 2002 where that hasn’t been the case for me (and probably others).

I’d show up at the polling place, sign in, and stand there and listen to the poll workers scramble. “Where are the headphones?” “Anyone know how you make that computer talk? “How do you turn it on?” “Why isn’t there any sound?” “How’s it supposed to work?” They seemed to want to do right by me, but few of them knew what “right” was.

In the end, even after that Help America Vote Act was passed, my husband Mike (who can see) still had to sign an affidavit, guide me to a traditional voting booth, read the choices out loud and wait for me to tell him (and anyone else near enough to eavesdrop) who I wanted to vote for.

But not today. Mike had an errand to run, so I showed up at our precinct alone with Whitney, my Seeing Eye dog. Poll workers seemed sincerely happy to see us, they helped me fill out a paper form to register, and after I used a strait-edge to sign on the dotted line, one of the poll workers showed my Seeing Eye dog Whitney and me to a computer.

“You know how to work these?” she asked, placing a special handheld contraption the size of a cell phone in my hand. I nodded yes (I’d attended a special class free-of-charge earlier at the Chicago Public Library to be introduced to this technology) and put headphones on. Tactile buttons on the contraption allowed me to take my time, scroll through the ballot, mark my choices, and…abracadabra! I voted.

All. By. Myself.

A small thing for some, but huge for me. A lot is riding on today’s vote, and I felt privileged –and proud – to have a part in making these important decisions.

Now, bring on those presidential elections in November!

Take our election survey so we can bring issues to the candidates that most affect the Easter Seals audience.

 

Voting inaccessible? Try these voting hotlines

Touch screen voting machineI wrote a post earlier this month about times I’ve had problems accessing the talking voting machines at our local polling place. The Illinois primary is tomorrow, and this time I’ll head to the booth armed with phone numbers of hotlines ready to help people with disabilities who have problems voting :

  • U.S. Department of Justice, Civil Rights Division, Voting Section: for complaints related to ballot access, call 800-253-3931. TTY: 877-267-8971
  • Lawyers’ Committee on Civil Rights under Law Election Protection Hotline: For help with disability/access issues, call 866-OURVOTE (866.6878683).

During the last state primary my issue with the voting machine couldn’t be resolved, and my husband, who can see, had to sign an affidavit to be able to help me with a written ballot. Voting specialists on these hotlines recorded details and referred my issue “to the proper authorities for follow-up action.”

My hope is that the follow-up worked and things go smoothly tomorrow. Not only for me, but for all of us at the polling places. And if not, it is reassuring to know there are people on these hotlines ready to help.

If you haven’t yet, take our election survey on issues that may matter most to you (or not). Have your voice be heard!