Swimming for people with disabilities

by Beth Finke

I swim for exercise. My Seeing Eye dog Whitney guides me to the pool, and the only stroke I do is the crawl. One arm or another is extended in front at all times, protecting me from crashing my head into a wall. Tapping the lane marker on every other stroke keeps me swimming straight.

I like to swim. It’s a form of exercise I can do all by myself. I don’t need to tie myself (literally!) to a sighted runner, or pedal behind the lead on a tandem bicycle. Another thing: My friends who work out lifting weights, or running, tend to get hurt. Not me. Swimming is low-impact, safe. And now, with Thanksgiving around the corner, I’m adjusting my schedule this week to make more time to swim laps. I figure the more I swim, the more I can eat.

Many people with disabilities choose swimming as a form of exercise for those same reasons. A post on the Endless capABILITIES blog points out that people with Down Syndrome, autism, and ADHD (Attention Deficit Hyperactivity Disorder) often find that swimming can provide a range of cognitive and physical benefits. “Plus, provided there is a qualified instructor on hand, swimming is an extremely low-risk activity.”

The post devotes specific ways swimming can help people with each of those three conditions – a few paragraphs with specific ways people with Down Syndrome can benefit from swimming, a few paragraphs devoted to people who have been diagnosed with ADHD, and then these last couple of particularly poignant paragraphs about the benefits swimming can bring to children who have autism:

Often children with autism struggle with that daunting theater of team sports, such as soccer and basketball.

However swimming is very much an individual pursuit without the stressful pressures of group competition.

What’s more, statistics show that drowning is a very common cause of death for autistic children, so teaching them to swim provides huge safety benefits.

My favorite line of that entire post came from the paragraphs about ADHD. I’m heading to the pool myself now (well, with Whitney, of course!) and will leave you here with that line. “As a youngster, Michael Phelps, for example, was diagnosed with ADHD,” it says. “And we all know what happened to that young man…”

Get active with us! See Easter Seals recreational activities and camps for people with disabilities.

Blind at the art museum

by Beth Finke

Here’s a statement you don’t hear every day from a blind blogger: I spent my morning last Monday at Chicago’s Museum of Contemporary Art. I wasn’t the only blind person at the MCA that morning, either. Sina Bahram was there, too.

I met Museum of Contemporary Art’s ‎Chief Content Officer Susan Chun in early September when she and I both spoke at “Greater Together,” Chicago’s first Cultural Accessibility Summit. The Museum of Contemporary Art had hired Sina Bahram to help them design an accessible website, she mentioned Sina’s work during her talk, and she sought me out afterwards to invite me to meet him the next time he visited Chicago.

Sina Bahram is the founder of Prime Access Consulting all users.”

I would have thought that designing a site for the Museum of Contemporary Art, where they especially want to show off the beauty of their artwork and exhibits, would be difficult. But Sina says that’s because of this commonly held belief that if something is accessible it can’t be pretty or creative, it has to be ugly and boring.

That is wrong, and spreading that myth can harm everybody from designers and developers to users. Sina says you can make anything simultaneously beautiful and accessible, and you can see, ahem, that for yourself now: Museum of Contemporary Art unveiled its new website Wednesday. You can’t help but notice their pride in the new site when you read this excerpt of their description of it online:

Together, we have developed a series of projects that we hope will serve as a model for art museums hoping to reach and support members of the disability community.

One of the most exciting and groundbreaking of these initiatives is Coyote, a toolkit and project to create and publish visual descriptions of all of the images on this site. The Coyote software, developed by Sina Bahram’s team at Prime Access Consulting, is an open source tool. At the MCA it has been used by staff from across the museum to produce image descriptions that allow the blind and visually impaired to engage more fully with the visual arts. Very cool.

How can you love your body when your body doesn’t love you back?

by Erin Hawley

Erin Hawley

How can you love your body when your body doesn’t always love you back? I struggle to answer this as I become more aware of society’s ridiculous beauty standards, and while dealing with the progression of my Muscular Dystrophy. It’s easy to promote self-love and body positivity, but not easy to practice it yourself. Finding that balance of living with pain or physical inability, and being proud or accepting of your difference, is challenging.

Since I don’t have the muscle strength to hold myself up, I have to sit in a crooked position in my wheelchair, leaning far to the left on my arm; this leads to daily back, arm and neck pain, and requires frequent repositioning by my nurses or loved ones. I don’t mind needing help, as I’ve been disabled since birth; it’s second nature for me to work alongside someone in my daily activities. But there are times when I wish I could just sit straight to alleviate that pain; I often think “how cool would it be to go a day without being in pain?” I sometimes wish I had an abled body just so I could reposition myself as needed.

When I’ve had these feelings in the past, I always felt like a fraud; how can I be a good disability advocate if I harbored these thoughts? Doesn’t wishing the impairment away, even if it was a fleeting idea, go against everything I hold true about disability rights and disability pride? What would abled people think if they knew I wasn’t 100% okay with my disability? Disabled people are often portrayed as objects to be pitied –and I never wanted anyone to pity me. No one wants that. So I always thought it was important to show people I was proud of my identity, even if that meant never talking about the bad stuff – including the pain. That’s why it took me a while to speak up about my somewhat unrelated depression and anxiety; I didn’t want people to think I was suffering because of my Muscular Dystrophy. I was afraid to fall into that pity stereotype.

Looking back on it, I realize I was being too hard on myself. Anyone would want pain to go away, and for me, the only way to do that is to not have my disability. Pain killers can only do so much. Now that I accept these desires as reasonable, as part of my disabled identity, I am able to love myself even more. No longer do I feel like a fraud – instead, I understand that my relationship with my disability is ever-evolving, and there is no singular way to exist; that is what makes me beautiful. That is how I am able to love my body through the emotional and physical pain, and despite the narrow lens of society’s sexist and ableist standards.

So often, campaigns and slogans about loving your body leave out the bodies of disabled individuals. And even when they do include us, they tend to ignore instances of mental illness and chronic pain. Sometimes I don’t love how my body makes me feel. Sometimes I wish I had a different body. And you know what? Those feelings are valid. Those feelings don’t mean I can’t also love myself and my body. It’s a life-long love and hate relationship, and that is okay.

Join other young women with disabilities for support and conversation at Easter Seals Thrive and its Facebook and Twitter pages.

This post was originally published on the Sweet Tart Beauty blog.

5 Myths about Veterans and Military Families

by Col. David Sutherland

This week we celebrate 22 million living veterans who span generations, conflicts and all U.S. states and territories. Veterans Day seems the right time to educate and inform about who we are by refuting the myths about what veterans and military families are not.

1.    Myth: Enlisted vets are less skilled.

All men and women, especially our military’s non-commissioned officers (NCOs), have the capacity for greatness. NCOs know how to problem-solve, operate under deadlines (often in the throes of crises) and manage large teams of varying ages and skills. Military skills come not from large lecture halls or specific degrees but from practical application. I’d stake my reputation on the opinion that enlisted soldiers are better educated and more skilled than the U.S. civilians they protect.

2.    Myth: Military spouses don’t need to work.

Rising cost of living, low service member pay, and the rising cost of benefits have led to a resurgence in military spouses seeking work. The Military Officers Association of America estimates that 90 percent of female military spouses are underemployed, meaning they possess more education and experience than needed for their jobs. By short-selling military spouses, employers overlook the assets that they bring to the table.

3.    Myth: The job market for veterans remains bright.

Corporate America and the White House have pledged more than one million jobs for veterans – about two pledged jobs for every unemployed service member of any generation. So why were 573,000 veterans unemployed in 2014?  If the job market for veterans were truly bright, those numbers would be very different.

4.    Myth: Vets and their families have access to free healthcare.

Like their civilian counterparts, many veterans and their families struggle to secure affordable healthcare. Only 40 percent of veterans qualify to receive healthcare through the Veterans Administration (VA) system – a system that does not serve family members or families of the fallen. Even with Tricare, Medicaid and Medicare, one in 10 veterans under age 65 is uninsured. It’s simply unfair for someone brave enough to have worn a uniform for this country.

5.    Myth: The end of the wars equates to diminishing needs.

Even as the United States draws down its presence in Iraq and Afghanistan, more than 150,000 troops are deployed in nearly 150 countries around the world. These numbers will not be going down. The needs of this population are evolving, not disappearing. For example, the 5.5 million caregivers of veterans in the United States will serve this support role for 50-plus years – and both veteran and caregiver will need assistance. The tails on any wars are very long. We simply cannot afford to allow the sea of goodwill for our veterans turn into an ocean of apathy.

Watch Easter Seals Word Association: Veterans Edition, with JR Martinez and Travis Mills

Tips for hiring veterans from the pros.

See how Easter Seals is supporting veterans and military families.

What happens if you can’t see emojis?

by Beth Finke

Two years ago I published a post here about how some people who are blind access a program called VoiceOver to use an iPhone — VoiceOver parrots every letter we type into a text, but it wasn’t until I upgraded to IOS 9 last month that I came face-to-face with an emoji.

A key next to the space bar on the iPhone keypad lets users choose from lists and lisps and lists of emojis to use with texts. VoiceOver reads the images out loud for those of us who can’t see them. Let me show you what I mean. Here’s a sampling of what I hear when choosing from the list of “Smileys and other people” emojis:

• “miling face with sunglasses”
• “Unamused face”
• “Winking face with stuck-out tongue”
• “Sleeping face”
• “Nerdy face with thick horn-rimmed glasses and buck teeth”
• “Neutral face”
• “Excited face with money symbols for eyes and stuck-out tongue”
• “Expressionless face”
• “Smiling face licking lips”
• “Slightly smiling face”
• “Smirking face”
• “Face with rolling eyes”
• “Face with no mouth”
• “Flushed face”
• “Thinking face”
• “Angry face”
• “Pouting face”
• “Disappointed face”
• “Grinning face with clenched teeth”

Wait. Can a person clench their teeth and smile at the same time?

Pause.

I guess you can! But would I ever want to see a picture of that on a text message? Dunno.

After the powers that be added 150 new emojis to their operating systems late last month, the British Broadcasting Corporation’s Ouch blog asked Damen Rose, a BBC reporter who is blind, to demonstrate what emojis sound like on his Smart Phone. I listened to the podcast and found myself agreeing with Damen when he lamented how the emoji craze is just one more example of how the technological world is becoming more and more visual. “We’ve sort of arrived at this glance culture, haven’t we, where we take in so many things at a glance on a screen,” he said. “We’re supposed to keep up with various events, understand different memes, get the references, et cetera, and it all happened soooo quickly and sooooooooo visually.”

I gotta admit, I do feel left behind sometimes. People doing quick smart phone checks for sports scores or news. Looking real quick at Facebook. Checking text messages at a glance. I just can’t keep up. Without being able to see, I’m not part of the “glance culture.”

But wait. Maybe there’s an “Eyebrows up!” emoji, and if there is, I need one right now. I mean, maybe I can’t just glance at a written description of an emoji, but isn’t it pretty incredible that technology companies have come this far with accessibility? That they actually found someone somewhere to write hundreds (thousands?) of emoji descriptions for people like me, who can’t see them?

I sure think so. My emoji? “Smiley face with eyebrows up.”

We should all sign this petition for accessible airlines

by Ben Trockman

By now you may have heard of D’Arcee Neal, a disability advocate who has cerebral palsy. He made headlines after dragging himself out of his seat on a United Airlines flight and crawling roughly 50 feet to his wheelchair so he could get to a restroom.

Crawling? Could it be that urgent? A story in the Washington Post explains that D’ Arcee had just flown five hours without a bathroom break. Why wait? Because having a physical disability, with the necessity of a wheelchair for mobility, he could not physically make it to the rear of the plane where the restrooms are located. The aisles aren’t wide enough. From the Washington Post article:

Then he had waited the usual 15 minutes for the plane to empty before someone could help him exit in a special narrowly built wheelchair. But the wheelchair never came.

So D’Arcee waited.

And waited.

And waited.

Until finally, he could wait no longer.

The story reported that United Airlines sent a statement to CNN apologizing for the incident. “As customers began to exit the aircraft, we made a mistake and told the agent with the aisle chair that it was no longer needed, and it was removed from the area,” the airline said. “When we realized our error — that Mr. Neal was onboard and needed the aisle chair — we arranged to have it brought back, but it arrived too late.”

So yes, it may sound strange that a man would have to crawl the length of a plane to use the restroom, but this is no exaggeration. D’Arcee Neal crawled from his seat in 11F to the jetway, found his wheelchair waiting there, got in and rolled from there to an accessible bathroom in the airport.

For people with disabilities, this is a reality. A dangerous reality. Those in wheelchairs who choose to fly must take the risk of being trapped in the airline seat with nowhere to go, no way to get to the restroom, and no way to exit the plane in an emergency in a timely fashion.

Wheelchair users have to be transferred to a special airline chair to board a flight, but even if we were in our own chairs during flights, the aisles are not wide enough to access the restrooms.

I know it sounds crazy, but those of us who use wheelchairs face extra health risks to fly for business, on vacation, to see a ballgame, visit family, or just simply have the urge to fly. After boarding the plane, our wheelchairs (our mode of transportation, and the device that allows us to move 6 inches, 5 feet or 10 miles) are taken away and stored underneath the plane and left to roll around with boxes and suitcases. Essentially, our legs are gone, and they won’t return until we reach our destination.

I would like to believe in this day and age that wheelchair users could board a plane without having to be separated from our “legs.” Unfortunately, the airlines continue to operate as an old-fashioned, inaccessible entity. Yes, they follow the rules and guidelines of the Air Carrier Access Act (written in 1986, predating the ADA) but it’s obviously not sufficient.

If the airlines were truly accessible for people with disabilities (the largest minority in the world), do you think we would be reading these horrifying stories in the Washington Post and all sorts of other media outlets? I think not.

It’s time that legislators, airline executives, aeronautical engineers and thousands of individuals with disabilities get on the same page and start creating planes that are accessible to all.

No more days where a man like D’Arcee Neal has to crawl to relieve himself. No more days filled with fear of showing up at a destination to discover your wheelchair has been lost or broken. No more embarrassment, humiliation or feeling of helplessness without our chairs. These days must come to an end

Let’s promote a life-changing improvement to the current system of airline transportation. If you believe airlines should be accessible to all, please sign this MoveOn petition for wheelchair access on commercial airlines. Let’s join together and acknowledge that it’s time for a change.

Related Resources:

Help advocate for people with disabilities in Washington, D.C., but joining Easter Seals Legislative Action Network.

Could I have done more to stop the bullying? Stop a suicide?

by Elsa Remak

Here’s our PR-Communications intern Rachel Gaddis with a very personal, poignant blog post about bullying.

Words

by Rachel Gaddis

I didn’t go to her funeral.

The funeral was 450 miles away, so I just sat on a ratty, freshman dorm couch and cried. I felt sick, broken and angry, but most of all I felt regret.

They didn’t believe she had planned it. It was spontaneous, they said. She just reached her breaking point. She believed the voices that belittled her to the point where she took her own life. My voice? It never found her ears. I had not said a word.

I found a picture of us sitting together from earlier in the year, before I graduated and moved away to college. We were leaning in close, her smile and mine almost touching. How could she not know?

But I didn’t tell her.

Three years later, I still remember how people would roll their eyes at things she said. I just wish I could hear her voice now. What was it they had found so repulsive? So annoying? She was a miracle, considering her biological parents had abused drugs. She was incredibly high functioning, merely diagnosed with ADHD.

I thought I was doing enough by not joining in on the bullying. She wasn’t there to hear what they said, and I thought she would never know. I was wrong.

Could I have even handled going to the funeral? What would it have been like, my eyes level with her casket at the altar of the church, [feeling like] I was partly responsible? Packed in a pew full of people cloaked in black, I would be the one wearing regret. How many people there wished she were still there?

I was told the church had filled, and the pastor had spoken beautifully. But did she know these things? And so what if she did? No matter how many people were there, and whatever the pastor said the day of her funeral, those words wouldn’t bring her back.

Words. Words we should have spoken sooner rather than later.

Maybe worse than sticks and stones are the words people throw, whether carelessly or cruelly. The scars of words are easier to hide, but they are much harder to heal. Words can be burned on your mind forever. Faces may fade, but words are the thing I still find fresh. Sometimes they are hurtful words reaching farther back than junior high.

How long could I have endured it, if it were me? She just absorbed those words day after day for months.

Her peers had been relentless with their bullying — at school, on the bus, at church. Did anyone know what she was going through? I mean really know?

What I want to know is this: How many people now felt like me? Who else felt that all they deserved was to sit on an unraveling couch and remember all the times they could have said, “I love you,” “You are precious,” “You are valuable”? All the times that they–that I–could have rebuked others’ careless and cruel words.

Maybe worse than sticks and stones are words unspoken. If I had told her what I thought of her, would she still be here? I wish I had told her that she had been so wrong to believe the hurtful things others had said about her.

Three years later, this month, I wish I could say she were still here.

Related Resources from Easter Seals

If you’re a young woman with a disability looking for an online support network and source for empowering advice, then try Easter Seals Thrive.

If you’re a veteran or a relative of a veteran and need confidential help, then dial the Veterans Crisis Line at 1-800-273-8255.

Caregivers are not paid what they’re worth

by Beth Finke

November is National Family Caregivers Month, and we’re kicking it off with a guest post by my husband Mike Knezovich.

by Mike Knezovich

Back in 2002, after he turned 16, our son Gus moved to a residence for people with developmental disabilities operated by Bethesda Lutheran Communities. I have a pretty good list of “most difficult times in my life,” as we all do if we live long enough. That time is unsurpassed.

Gus was game for a hug–after he finished his Whoppers. With cheese.

But it was made substantially less difficult by the wonderful human beings we like to call staff, or caregivers, or care providers or some other clinical term. I’ll just leave it at wonderful human beings (WHBs). They communicated with us regularly during the transition, sought and found ways to make Gus feel at home, and eventually, he did. And eventually, we could visit Gus, and not cry our eyes out on the 2-1/2 hour drive home.

Then he had to move again. He had lived in a dormitory style building, which was brand new when he moved there—but the movement toward group homes in community settings had become the flavor of the day. And so, Gus moved with three other fellows into a nice little ranch home across from a nice little park. And we held our breath that it would go OK. It did.

You know why? Those WHBs.

Last month Beth and I met Gus and one of those WHBs at a doctor’s office near where Gus lives. Gus has been having some behavioral issues—nothing we hadn’t seen before, but troublesome because they hadn’t manifested in a long time And so we and the WHB were seeing a doctor about it.

After the appointment, we met Gus and the WHB at Burger King, where our son was treated to two whoppers with cheese and French fries. We took the opportunity to chat with the WHB, learned about how and why she worked with folks like Gus, and generally had a swell time while Gus plowed through his lunch.

A month earlier, I’d attended a meeting of parents and guardians of people who are served by Bethesda. Times are hard—they’re facing cuts and budget issues like everyone.

Beth’s mom Flo got to visit with Gus and us at his little house a few years back–she was 93 at the time.

Here in Illinois, a budget standoff is already taking a toll on everything from literacy programs to health care. Staff are out of work and many of their clients—who were already out of luck—are just out. On their own.

We’ve got something wrong right now. Really wrong. Forget ideology. Just ask yourself: Is there enough money in this country to pay people who care for people like Gus (or people like Beth’s mom at the end of her life, or people like us when we get there) what they’re worth?

On one hand, I’d say no, because what they do is priceless. But we can pay them more. And we can. And that we don’t is on all of us.

As we chatted with the WHB at Burger King, she thanked us profusely for attending the meetings. “When it’s just staff, the doctors don’t take us seriously,” she said.

Having not been taken seriously by a doctor or two in our time, we completely empathized. And before we left, we were sure to say, “No. Thank you.”

This Halloween, look for this bulldozer and high-five her

by Bernhard Walke

Halloween is a holiday that was never on my excitement radar as a child, nor my wife’s. Perhaps it was the cold finally arriving in the Midwest, the grim notion of existing in darkness for the next six months, having more of a salt tooth than a sweet tooth, or my hatred wearing masks that forced me to breathe my own humid expelled breath. Whatever the reason was, I never enjoyed it.

Until kids.

I work in a high school and have had the opportunity to chaperone the Halloween Dance year after year. Students walk in dressed as Mario and Luigi, Where’s Waldo, or Thomas the Train. One student actually dressed as Holden Caulfield toting a suitcase, a duck, and a red hunting cap. Teenagers demonstrate an infectious zeal and excitement at dances — especially when donning their zany costumes.

One year I was so inspired by the enthusiasm of these teenagers that I ran over to the neighboring drug store at the last minute, bought some dried chili peppers, pinned them to the chemistry teacher’s lab coat and voila! I was instantly Dr. Pepper for the evening.

The creativity and enthusiasm demonstrated by my high school students inspired me to put my own creativity and ingenuity into my daughter’s Halloween costumes over the years. Early on Elena wasn’t able to sit independently, so many of her first costumes were designed knowing we’d be carrying her.

Her first costume was a lobster inauspiciously placed in a pot destined to be a tasty meal. You can imagine our delight (and Elena’s disdain!) when a parent showed up at our house dressed as a chef. Elena was not happy with my suggestion of running in the house to procure some lemon and butter.

The fun we had with Elena’s lobster costume inspired us to come up with creative costumes ever since. Elena was so small that we could carry her door to door with ease.

When Elena was two years old, we decided she’d go as a bag of money: Rosa’s visiting aunt sewed pieces of green felt rectangles together to transform Elena into a bag of freshly pilfered cash. Rosa and I both dressed like cat burglars, and I was as giddy and excited as a student at the Halloween dance as the three of us trick-or-treated around our neighborhood that year.

Last year we signed up Elena for the annual September fashion show at Easter Seals DuPage and the Fox Valley Region. The theme was “Rock Around the Clock,” and Elena’s aunt quickly and enthusiastically volunteered to sew a poodle skirt. She even made a matching scarf so Elena didn’t have to wear her ever-present bib. She was such a hit at the fashion show that we reprised this costume for Halloween last year — She wore it to school and paraded her 50s costume around the hallways.

Between Elena’s weekly routine of PT, OT, Speech Therapy, adaptive equipment, and mind-numbingly long meals, there are few things that are normal in our daughter’s life. Even other holidays can be difficult for her: she can’t tear open Christmas presents and perhaps Thanksgiving will present eating challenges. Halloween allows her and us parents to enjoy a holiday with the same childish excitement and silliness that our goofy and warm teenagers demonstrate.

Elena will be 5 on Monday and her elongated and lean body doesn’t necessarily lend itself to being carried around the neighborhood with ease anymore. She was in the DuPage and the Fox Valley Region Easter Seals fashion show again this year, and this year’s theme was “Come Build With Us.” We used a collection of cardboard, wood, duct tape, zippy ties, and obnoxious yellow construction paint to convert Elena’s wheelchair to a bulldozer. After a few nights painting, sawing, cursing, and imbibing a few beers, I transformed her wheelchair into a heavy-duty earthmover.

Elena’s costume was a huge hit when her two cousins pushed her down the runway, and we hope it will garner praise and attention as we parade it through our neighborhood this weekend. So, if you see a four-year-old girl in a wheelchair bulldozer this Halloween, feel free to give us a high five and a smile. Elena’s pretty good at those.

More clever Halloween alternatives for kids with disabilities, from Easter Seals.

Do Medicare Part D cost increases affect you?

by Randall Rutta, President and CEO

Some in Congress are exploring policies that would make certain medicines more expensive by increasing co-pays for people who qualify for subsidies under the Medicare Part D program. These so-called Low-Income Subsidy (LIS) beneficiaries often are managing multiple health issues. They are more likely to have a disability and may live with higher rates of functional and cognitive impairments.

To qualify for this program, an individual must have an income below 135% of the federal poverty level, which makes it highly unlikely that there is extra income to pay out-of-pocket costs. In many of the states, an individual who is eligible for both Medicare and Medicaid are, to qualify, below 100% of the federal poverty level. For these beneficiaries, even a minor increase in out of pocket responsibility could be the impetus to stop taking a medication or to skip doses of a medication to stretch the supply. Any of these results could easily lead to poorer health outcomes, which would only cost the program more in unnecessary medical care or even hospitalizations.

In what seems an interesting twist, there has also been a push for more creative and effective adherence programs. If adherence is the goal, an increase in out-of- pocket costs for the beneficiary seems more likely to lead to skipping doses or switching medications rather than better compliance with a medication plan.

Individuals who qualify for the LIS program are already pretty good at taking the generic form of medications. According to the Medicare Payment Advisory Commission, in 2011, 74 percent of prescriptions for these Part D enrollees were filled with generic drugs and that percentage is increasing. This is an already vulnerable population that needs better supports to adhere to medication plans, not more out-of-pocket expense to make that job even harder.

Find out how you could have your voice heard in Washington, D.C., with Easter Seals Legislative Action Network.