Frida Kahlo, Halloween, and Adaptability

It has become something of a Halloween tradition here on the Easterseals blog to feature a post from contributor Bernhard Walke, whose daughter, Elena, dons a creative, clever and cute costume year after year. In the past, she has been a bulldozer, money bag, lobster in a pot, Cinderella, and a Ratatouille-inspired chef. Here’s Bernhard with a description of Elena’s costume this year, one of our all-time favorites.

Elena smiling dressed like Frida Kahlo with a bright floral headpiece and dress.Elena did an expert job of selecting her princess costume last year, but Halloween 2017 was inauspicious to say the least. Elena was in the midst of declining health back then, and after Christmas she spent two months in the hospital.

In the months since her discharge, she’s been in great health, in great spirits, silly, and even tested at grade level. Suffice it to say, these days we are enjoying her good health and her delightful company.

So yes, she has been doing well on a daily basis, but still my wife and I are apprehensive. At any time, things could take a turn for the worse. As a result, we tend to edit ourselves and place undue pressure on our daughter.

And so, when it came to Halloween this year, we tried to create a simpler costume for Elena. That way, if things went South, we wouldn’t resent our daughter for the amount of work we’d put into the costume. One of the greatest things Elena has taught us is adaptability. If things don’t work out the way we want them to, we always have a plan B, C, or even D.

This year, we all decided that Elena would be Frida Kahlo for Halloween. Why? We have a few reasons:

  • Elena is Hispanic on her mother’s side and European on her paternal side, just as the artist was;
  • Despite the physical limitations of their bodies, both Frida and Elena are very creative;
  • It was a rather easy costume to put together (see above, about being ready in case things don’t work out).

Our local school district hosts an annual parade for Halloween. Students strut around the school playground class by class to show off their costumes. This year’s parade boasted Harry Potter, Hermione Granger, the Notorious RBG, and various Marvel characters. But where was Frida Kahlo? Something must have happened.

Perhaps Elena’s body was tight? Elena wasn’t in the mood? Or then, there’s this: Second graders like the nurse’s office. Maybe Elena wanted to hang out in the nurse’s office instead of being part of the parade.

Elena trick or treating in her bright Frida Kahlo costumeMy wife and I have learned not to be disappointed by things like this. We want Elena to know that she isn’t obligated to perform for others. She isn’t the class mascot. She is not required to show others what she can do. We want her to do things on her own terms.

After the parade was over, Elena emerged with her physical therapist. Our daughter was visibly upset. Seeing me there with her grandparents didn’t help. She started crying. Clearly, this girl was not willing to be paraded around the neighborhood. Unlike her extroverted father, who won’t speak to a crowd smaller than 500, Elena is a bit more introverted.

Instead of parading around that day, Elena knocked off a little bit early from school to spend time with her grandparents, picking flowers in the alley.

And so, instead of forcing our daughter to go trick or treating, we let her do what she wanted: she gave out candy to the friends who came by to visit. Those friends were so kind: they greeted Elena, said they liked her costume, and doled out a few high fives.

When Elena’s cousins arrived, together we managed to go with Elena to each house on the block. We were flattered to discover that several houses had put aside candy that they knew Elena could eat. When steps prevented Elena from getting up walkways to the door of some of our neighbor’s houses, the neighbors walked down the steps themselves to greet Elena on her level. That, or Elena’s cousin Carmen would march up the walkway and skillfully pick through the goods offered to choose candy appropriate for Elena.

And so, okay. The parade was a bust. But who cares? Elena taught us how to respond — rather than react — to a situation. We had a great Halloween.

 

Review: A Play Produced By People With Disabilities Breaks Down Barriers

Anja Herrman (at age 9) and her dad

Anja Herrman at age nine with her dad

Remember the 9-year-old who wrote a post here for Valentine’s Day years ago about how much she loves her Dad? Anja is a teenager now, and she’s back with us as a guest blogger.

by Anja Herrman

Last month I went to review and to watch a show called Six Stories Up in Climate Change. This show was put on by a unique theater group called Tellin’ Tales, whose mission is to “shatter barriers between the disabled and non-disabled worlds” by bringing together children and adults from both communities to share their stories on stage. From the Tellin’ Tales web site:

“Tellin’ Tales exists to create a bridge between children and adults with disabilities and those without disabilities through the nurturing and innovative performances of people’s personal stories. This is achieved through mentoring and collaboration. A key goal is to bring together diverse populations all the while helping them to recognize commonalities and build a strong sense of community in Chicago.”

“Six Stories Up in Climate Change” was a fictional story about six kids working to save the planet in two parallel worlds: A fantasy world ruled by an evil, destructive raven (my personal favorite character because she’s so ruthless) and our world, where a greedy developer is looking to build a complex on rare forest in Alaska. The protagonists had to rebuild the climate totem pole before the raven took over the world and the developer built the complex.

The show had some humorous bits and I appreciated that children directed and starred in the production. As a young theater critic, I did make the following notes:

  1. Why only cover environmental climate change? In the world of climate and disability there are many other climate topics that I would have like to have seen from a disability perspective such as political climate, accessibility in the world climate, equality climate and so on.
  2. I didn’t see personal stories from every kid. Considering that TT’s mission is to “break down the barriers between disabled and non-disabled worlds through personal story” I thought it was interesting that only 2 of the kids fulfilled that requirement.

Maybe I’ll sign up for the TT newsletter to keep up with future events. If one sounds interesting, I might try attending a show there again.

 

How Can We Make Our Communities More Accessible AND More Walkable?

#10MinuteWalk Twitter Chat. Join us Tuesday, November 6 at 3 p.m. EST.There is something to be said about stepping away from one’s responsibilities – the sink piled up with dishes, the unmade bed, the unanswered emails awaiting in your inbox – and just taking a nice, steady stroll to nowhere in particular. The clouds up above and the sidewalk beneath you, you wind around your block; maybe to the park, maybe just a quarter of a mile in any direction.

Taking a walk is one of life’s simple pleasures, but it is an activity that is not necessarily available and/or accessible to everyone. That’s why the Every Body Walk! Collaborative is “committed to promoting walking and walkability initiatives, to empowering champions and to pushing for safe, accessible and inclusive places to walk.”

We at Easterseals love this mission and were so excited to team up with the Every Body Walk! Collaborative and America Walks for a Twitter chat. Read the recap below!

 

Don’t Fear Disability: A Conversation On Disability and Horror Fiction

The month of October means embracing all things spooky; ghost stories are told, haunted houses are visited, and horror movies are watched in theaters and living rooms across the country. Whether you’re a fan of old school horror classics or anticipate new releases, chances are you’ve noticed some prevalent themes that span the genre, some of which are problematic especially as they relate to disability.

Easterseals Thrive hosted a Twitter chat to dive deeper into this topic and look at this staple genre through a critical lens. They asked questions about the portrayal of mental illness in disability fiction, disability-related tropes, and more. Check out the Twitter Moment below, or search for tweets using the hashtag #DontFearDisability.

 

Take This Card With You To the Polls On Election Day

Voting Resource CardElection Day is just two weeks away, and all 435 seats in the U.S. House of Representatives are up for election this year. Additionally, 35 seats in the U.S. Senate are up for election as well. People with disabilities can make sure their voices are heard in this election by using our checklist to help you keep in mind that voters with disabilities have the right to:

  • Vote privately and independently
  • Have an accessible polling place with voting machines for voters with disabilities
  • Wheelchair-accessible voting booths
  • Entrances and doorways that are at least 32 inches wide
  • Handrails on all stairs
  • Voting equipment that is accessible to voters who are blind or who have low vision
  • Bring your service animal with you into your polling place
  • Seek assistance from workers at the polling place who have been trained to use the accessible voting machine, or
  • Bring someone you know along to help you vote.

We strongly suggest you print out our voting resource card and take it along to the polls. That way, if you have trouble accessing the polls, you can contact the appropriate number(s) listed on the card for help.

 

Need to Get to Your Polling Place? These Companies Offer Reduced Or Free Rides!

After the last post I wrote advocating that everyone with a disability make sure to get to the polls and be seen voting rather than voting absentee was published, I found myself feeling a little sheepish. Here’s why: I didn’t take it into consideration that many people with disabilities live far away from their polling place, and it can be difficult to get a ride there. I live right across the street from my polling place! All I need to do to get there is give my Seeing Eye dog the “Forward!” command. My last post failed to acknowledge that few people with disabilities have it that easy when it comes to getting to their polling place.

When I heard about Uber and Lyft’s respective announcements about offering free or reduced rides to polling places, you can imagine my excitement.

The ride to vote logo with a checked box in place of the O

c/o Lyft

Lyft announced back in August that they’d be offering 50% discounts and free rides to people who face significant obstacles to get to the polls on November 6, 2018. In their announcement Lyft pointed out that “an estimated 15 million people were registered but didn’t vote in 2016 because of transportation issues,” and that statistic is what motivates them to offer free or discounted rides to voters.

And now Uber’s CEO Dara Khosrowshahi has announced that on November 6, 2018, the company will partner with #VoteTogether and Democracy Works to provide free rides to the polls, too. A quote from Khosrowshahi explains:

“At Uber, we want to do our part, too–by helping voters register and get to the polls on Election Day.

Using our technology and resources, we can help make it easier for every Uber rider in the U.S. to get to their polling place at the push of a button. We’re also partnering with nonprofit organizations to register voters before state deadlines and provide free rides to the polls on November 6.”

Uber will also be inserting a “Get to the Polls” button inside its app on Election Day to help voters find their polling place and book a ride. Huge thanks to Lyft and Uber for going the extra mile to support our democratic process.

 

Why Disability Visibility Matters at the Voting Booth

Capitol Hill against a vibrant blue skyElection officials around the country are hard at work getting voters registered and registrations updated as the Nov. 6 General Election approaches. In some states, the deadline for early and absentee voting has already passed. That deadline doesn’t concern me, though. I always vote on Election Day, right there at the polls. Here’s how that works:

  • I’m handed a headset, and a poll worker guides me to a special voting machine equipped with speech software
  • That text-to-speech software translates the candidate selections on the ballot into spoken choices
  • A special keypad enables voters like me, who are blind, to choose our candidates by touch
  • Our selections are confirmed by voice again before the ballot is cast

Some friends are astonished to hear all I have to do to cast my vote. “Isn’t that a pain? Why don’t you just vote absentee?” I answer with a shrug. For me, there’s no substitute for the feel of a voting device in your hand, the sound of your vote actually registering.

And then there’s this: In the not-too-distant past people with disabilities did stay home, not just on voting day, but perpetually. We can never go back to those days, and voting publicly is one way to help ensure we don’t. I like to think it means something for other voters to see someone like me, a citizen with a disability, exercising the same basic right that they do, voting in private without public assistance.

Millions of Americans with disabilities share this ambition. We can’t let others forget about us. One way to do that: let them see us, out there with everyone else, casting a vote in November.

 

Recognizing the Gifts and Talents of All

A young man serving a drink while working as a baristaPeople with disabilities of all genders, races, socioeconomic statuses, and ethnicities have a history of making the world and our communities richer, better places. What potential do we then lose when we allow barriers to prevent our fellow humans from participating?

Some of the most groundbreaking inventions and innovations throughout human history have been inspired and conceived by people with disabilities. Some of these figures are household names: Thomas Edison, Temple Grandin, Albert Einstein, Leonardo Da Vinci and Stephen Hawking. But while many of the contributions of people with disabilities are in the mainstream, their names are often left out of the history textbooks and out of the conversation.

I recently came across a New York Times article that told the story of the OXO brand; A husband and wife teamed up to create a product that would be comfortable for Betsy, the wife, to hold (she had arthritis). As a result, they came up with a line of kitchen products based on the philosophy of universal design. While I had seen the company’s products lining the shelves of many major department stores, the story behind it, and the fact that it was created for all hands, escaped me. According to the article, it has somehow escaped many people, too.  This is just one of the many stories of inventions born of necessity for people with disabilities but ultimately adopted by people of all abilities. See also: The typewriter, text messaging, and the talking remote.

Even with all these accomplishments, the movement towards an accessible and inclusive society continues. Is our notion of what it means to contribute to society even inclusive of people with disabilities?

Right now, society is at a crossroads. People are paying closer attention to social issues that are important to them, looking for ways to be more involved. However, for society to continue to improve for all people living in it, we must face tough decisions about our institutions. Finding and removing the barriers within those institutions will be a challenging process.

At Easterseals, one barrier that is in the forefront of our minds is health care. Threats to Medicaid are looming, and additional cuts or caps to Medicaid will severely impact the services we provide. In fact after past cuts to Medicaid, 62% of our clients surveyed (including individuals with disabilities and seniors) were unable to access services like employment and training programs due to a lack of community provider options. We grapple with this reality while still working with people with disabilities to overcome barriers, some of which are societal in nature. As a result, we support some of society’s most powerful change agents. What kind of society will they want to create?

Michael, 34, an Easterseals Thrive supporter and freelance writer, said, “Traditionally, if you ask someone what they do, they’ll talk about their job. A lot of avenues are closed to me due to my mental health and to a lesser extent my physical health. My depression has significantly hindered my ability to succeed in academics which has, in turn, closed a lot of doors for me to achieve gainful employment. This further exacerbates my depression.

“Individuals are capable of contributing in more ways than economically. Simply being a good friend or an emotional support for other people can be a means of adding to society. Being someone who other people can rely on when they’re having a rough time is a remarkably useful ability. I think that this form of emotional labor has been undervalued traditionally, but that it is finally starting to come around as a viable source of worth for one’s self and within a community.”

 

New York Fashion Week, a Jumpsuit and The Next Generation of Fashion

This is part two of a post on disability, adaptive fashion and making style accessible to all. You can read part one here. Join us on social media and share your thoughts!

Last week was New York Fashion Week, and while I normally don’t pay too much attention to the fanfare, I was struck by one show in particular: Runway of Dreams FASHION REVOLUTION.

The show, presented by Runway of Dreams Foundation, showcased trends for Spring 2019 from designers like Nike and Target, and modeled by people with disabilities. The runway was fully accessible and, to top it all off, the show was hosted by actor RJ Mitte (you may know him from Breaking Bad).

Elsewhere in New York City, Mama Cax, a model-activist and amputee, walked in the Chromat show.

Two women, one in a wheelchair, wearing pastel, paint splattered jumpsuits from ASOS

via ASOS

Seeing this news got me thinking about a “wheelchair-friendly” jumpsuit from online retailer ASOS I’d seen making the Internet rounds a couple months ago. The paint-splattered, pastel jumpsuit is fun, bold and makes a statement. Perhaps even more thrilling than the design is the story behind it.

According to Racked.com, BBC reporter and para-athlete Chloe Ball-Hopkins had to miss a much-anticipated music festival headliner because “when the weather turned, her options weren’t great: She could wear a plastic poncho that was difficult to wheel in, or carry an umbrella and have a friend push her”. Fed up, she contacted the design team at ASOS and got to work on collaborating on the garment. It was met with unanimous approval and enthusiasm, from both people with and without disabilities.

If NYFW and that cute ASOS jumpsuit are any indication, the tides are turning.  At Easterseals, we’re all about being the change and finding solutions. What do you think is the best way to get more retailers carrying adaptive, affordable and stylish clothing?

 

How An Instagram Ad Got Me Thinking About Adaptive Fashion

As I was scrolling through Instagram on my way home from work the other day (taking the train, of course! Don’t Instagram and drive!) I came across an ad sandwiched between photos of a dripping ice cream cone and someone’s baby.

The stylized Instagram pic featured a sleek, chic woman in an Adidas track suit, jacket draped over her shoulders in the effortless way I could never pull off. Sitting in a wheelchair, she had one leg crossed over the other, sporting red slip-on booties so cool you immediately daydream of the scenario in which you’d wear them.

The copy below the image advertised a new adaptive line from Zappos.com, and when I visited the page I saw keywords for browsing like “easy on/off shoes” and “adaptive jeans”, “magnetic closures” and “diabetic shoes”. The results for women’s selections clocked in at 823 items. Featured among the pieces are affordable and stylish staples like this black swing dress that’s sensory friendly and this four-way reversible scoop jersey top.

If you’re a regular on the Easterseals blog, you know that we’ve taken a keen interest in adaptive fashion over the past few years. It’s clear why: In today’s age of social media, we’re eager to express ourselves and our style. We want to wear clothes that tell the world how we see ourselves and how we want the world to see us. We want to feel comfortable and confident and clad in pieces that, well, look good. For people with disabilities though, sometimes finding clothes that are adaptive come at the expense of personal style. Maybe that’s why seeing this ad among the mishmash of my Instagram feed gave me pause; fashion and accessibility and style intersected in a way that felt authentic and cool.

As Erin Hawley, Digital Producer for Easterseals Thrive, shared in a previous post: “Modified clothing has been out there for some time, but the styles are usually expensive, hideous, in limited production, or a combination of all three. It’s hard to find items with magnetic snaps, comfortable seams, elastic waists, or sensory-friendly wear.” She adds earlier in the piece, “As an adult, I still have trouble finding age-appropriate clothing that fit my small frame and appeal to my personal style. I’m 32 years old, and I don’t want to wear Elsa and Anna t-shirts (even though I love Frozen).”

Don’t get me wrong: I work with and know plenty of people with disabilities who infuse their style into their everyday wardrobe. But when we look at the big picture, it’s plain to see that the fashion industry is at a crossroads when it comes to designing clothes with people with disabilities in mind. As we’ve discussed here before, there are companies making great strides towards progress (looking at you, Tommy Hilfiger and Target). But wouldn’t it be fabulous to see options in any mall store and big box retailer? We’re moving in the right direction, but we need to get there faster.

Stay tuned for part two!