When One Mom is Called Supermom, She Responds With This

I am delighted to introduce Patty O’Machel as a guest blogger today. Patty is a writer, special needs advocate and mom. Her blog Parenting Outside The Lines collects and shares the stories of parents all over the world who are raising children with special needs, and her guest post lets you in on what that’s like here in America.

by Patty O’Machel

A cartoon mom with superhero mask holding two kids on either arm.

Image courtesy of Dreamstime.com

Another day, another person putting me on the pedestal. Any reasonable semi-narcissistic person would find this kind of admiration comforting, and most likely well-deserved. I’m a special needs mom, though, and those compliments can feel hollow.

I feel guilty when I can’t live up to that image people seem to have of me. My real self, the one who breaks down, who yells at her kids, who gets crabby and tired, is the true representation of me as a mom. But it is an image I can’t show.

I try very hard as a mom to all of my kids. The two considered “typical” kids and also the one who uses a wheelchair and needs my love and time and strength a little bit more. But I am certainly not the flawless, perfect image that people seem to see. I feel haggard at morning drop off and exhausted at 8am. By the time I get the kids to school, I have lifted her body several times in and out of her chair, gotten her dressed, brushed her hair and teeth, put on her orthotics, and hauled the chair and child out into the car. In the drop-off line I look over my coffee mug at the moms dressed for yoga and looking rested and resent them a little under the surface.

I shuttle my kids to multiple sports like other moms do, but I also work several therapies a week into the schedule. That requires moving a wheelchair and heavy child in and out of the car and back again, and it gets exhausting some days. I don’t do all this while adjusting my superhero mom cape. I do it with a grunt and a groan, with some undignified jealousy on occasion, and with all the strength I come with on that particular day.

It is my job as mom in this family, and one I truly do love most of the time. But some days my daughter’s needs are endless and they always have my name at the end of them. Some days I truly just want to rest and refill my reserves of energy and patience. When people look at me and comment how amazing I am and how strong I am, it often makes me feel unworthy. I am not exceptionally strong, I am just a mom who was given a special needs child to love and to raise, and I am doing what is necessary. Some days with grace, and some days without.

A special needs mom is not strong because she is some extraordinary kind of person, she is just a mom. A mom who was given a job that is harder than average and requires some deep pools of strength some days, but at her base level just a mom. No cape and no superhero powers.

Have a special story of your own to share? Post it at the Parenting Outside the Lines blog or email Patty directly at patty.omachel@gmail.com.

 

Are rallies in the United States accessible?

I am pleased to introduce Rachel Arfa, a disability rights attorney, as a guest blogger today. In her spare time, Rachel advocates for cultural accessibility, an area she is passionate about. Rachel is profoundly deaf, communicates by talking and lipreading and uses bilateral cochlear implants to hear. She is on the steering committee of the Chicago Cultural Accessibility Consortium and serves on the Board of Directors of 3Arts. She is a 2016 Fellow of Leadership Greater Chicago, and a 2017 Fellow in the Illinois Women’s Institute for Leadership (IWIL), which trains Democratic women to run for office.

by Rachel Arfa

A volunteer at the Womens March Chicago

Many volunteers helped make the Women’s March in Chicago accessible.

10,000.

10,000 people.

The number seemed daunting. We had just committed to providing accessibility for an event where the number of attendees might be as high as 10,000. Christena Gunther. Evan Hatfield. Risa Rifkind. Anna Cosner. We’d worked together on various cultural accessibility initiatives before, but never on this scale.

But we knew it would be worth it.
The details: Petrillo Stage in Grant Park, Saturday, January 21, 2017. The five of us met weeks ahead of the march to put together a plan to make the rally portion accessible. We wrote access information for the Women’s March website, conducted a site visit to scope out all the access points and determined placement for all the accessibility needs.

One week before the March, the location of the rally was changed.

We scuttled our initial plans, visited the new site at Jackson and Lake Shore Drive and re-assessed what would work.

And then the number of projected attendees grew from 10,000 to 22,000. This was getting big!

And then, the site changed again. Two days before the Saturday March, the location was moved to its final site, Jackson and Columbus. Weather reports were coming in, temperatures in Chicago were predicted to be well above average Saturday, and the final estimate of marchers was projected at anywhere from 50,000 to 65,000.

We met at the site the night before the march to walk through our plan and update the website about accessibility offerings – we wanted marchers with disabilities to know where to find accessibility tents if they needed more information once they arrived.

We were back at the site less than 12 hours later, at 6:30 a.m., to get ready for attendees to arrive. We’d recruited enthusiastic volunteers from Chicago’s theaters, museums and outdoor spaces – all had experience in working to make their own organizations welcoming and accessible to audiences with disabilities.

Rachel and her friends are in there!

Rachel and her friends are in there!

One accessibility tent was set up at the entrance to the rally, and the one near the stage was where attendees could check out audio description headsets and assistive listening devices. The audio describer set up her equipment in a spot with full view of the stage, armed with her stenographer’s mask. The American Sign Language (ASL) interpreters decided on their stage set-up. The screen for Open Captioning was placed on stage at optimal height for viewing. The chairs set up to provide seating for those unable to stand for extended periods of time were moveable, which created easy access for attendees using a wheelchair or mobility device. A DeafBlind participant was provided enough space for tactile interpreting to have access to what was happening on stage. Individuals who experience anxiety or PTSD had enough space to move around and not feel claustrophobic. And, oh yes. An easy route to the accessible port-a-potties was established as well.

The morning sped by as attendees arrived, but when I found the time, I reached out to some of them to ask if they’d be willing to let us know what their experience was like. Here are just three excerpts of many, many testimonials:

  • Bryen Yunashko: This was the first time that I, as a DeafBlind person, was able to fully access a political rally in Chicago. The efforts and constant dialogue by the accessibility team in the weeks following up to the March to ensure DeafBlind access was amazing, conscientious, dedicated and authentic. This event is a shining example for all future events in Chicago and elsewhere.
  • Aziza Nassar: The volunteers and staffers were very accommodating and culturally appropriate. Within seconds of my arrival to the gate, I was greeted by a woman who asked me and my friend (who is also a wheelchair user) whether we needed “dedicated assistance.” She pointed us in the direction of a tent full of volunteers just ready to assist, and another woman walked us down to the accessible viewing area for the rally stage pointing to the wheelchair accessible Port-a-Pottys.
  • Justin Cooper I knew that many of my friends would be in attendance and I wanted to be there to show my support. The accessibility that was provided made me feel like I was welcomed, that I was apart of the March, and that people with disabilities (especially women with disabilities) were included. I give credit to all the volunteers who helped.

These efforts were successful because disability access was integrated into the design of the event, including each time the venue changed. The March organizers recognized early on the need for disability access and supported our efforts after we’d come on board.

During the March it was announced not that there were 10,000 in attendance, not 22,000 in attendance, or even 50,000 in attendance. It was announced at an early point that there were 150,000 attendees. Then, a second announcement came saying there were 250,000 attendees. The march was a huge success, and we’d designed accessibility that was easily adaptable to the scale needed.

250,000 people.

250,000 strong.

250,000.

 

An Expert Shares Her Tips on Dating with a Disability

Vilissa Thompson sitting outside

Vilissa Thompson

Easterseals has supported mentorship programs for decades; this year, we’re celebrating our fifth year with Thrive, a community for young women with disabilities. Thrive focuses on different aspects of disability throughout the year, and this month, Thrive is talking with women about dating and disability etiquette.

It’s extremely important for young women to take action for themselves and others in the disability community, so Thrive reached out this month to gather perspectives on what dating and disability etiquette means to them in today’s world.

While reading through these women’s stories on Thrive’s dating and disability etiquette page, I was especially struck by Vilissa Thompson’s story. Vilissa is a social worker and disability rights consultant who uses a wheelchair, and she’s also the founder of Ramp Your Voice! Her guest post for Thrive was written as part of our #ResolveToRespect campaign.

Vilissa starts her post talking about what happens when she reveals her disability on a dating profile, or if it comes up in conversation on the first date. The post continues with some etiquette tips for people interested in dating someone with a disability. The list is short and to the point, and many of her suggestions would apply to dating someone without a disability, too. Example: Vilissa urges potential suitors to just say no when they figure out they’re not interested in pursuing a relationship.

“Man/woman/they up, and just say that you are not that into it,” she writes. “It’s better to know the truth than to be left hanging.”

Give Vilissa’s “Take Me as I Am” post a read. She’s an honest, candid, and fun writer — I promise you won’t be disappointed!

 

How Can We Respect People with Disabilities? Start by Listening.

I am pleased to introduce social worker and writer Jeff Flodin as a guest blogger today. Jeff was diagnosed with Retinitis Pigmentosa at age 35 and has worked with two Seeing Eye dogs: Sherlock from 2003 to 2010, and Randy since March, 2010. Writing has been Jeff’s primary vocation for 10 years, and he is currently working on a short story collection about vision loss.

by Jeff Floddin

Jeff Flodin with his Seeing Eye dog.

Jeff Flodin with his Seeing Eye dog.

With the arrival of each season— baseball, football, hockey and Christmas — I mosey over to my neighborhood barber shop for a haircut. It’s a short walk and with Randy the dog guiding the way my mind is free to wander like a free range chicken. But I tune in the traffic pattern as we near the corner of Ashland and Foster. As I calculate the red light/green light sequence, I feel a tug on my sleeve.

“You get on the bus here,” says the little old lady, pulling me like a truant child toward what must be the bus stop.

“Not today, ma’am,” I reply. “Today I’m just crossing the street to the barber shop.”

“No, this is where you get on the bus,” she says, raspy and urgent.

“No, I don’t,” I say. “You get on the bus. I cross the street.” I fake left and run right. But she grabs my sleeve again and swings me around.

“I know you want to be helpful and I appreciate that,” I say. “But I’m really not interested in getting on the bus. I’m interested in crossing Foster.” I take one step and then realize that, in the sleeve-tugging and swinging around, I’ve lost my bearings. She senses my confusion and leads me toward the bus stop again, all the while shouting, “The bus is coming! The bus is coming!”

I hear the bus stop and the door open—whoosh! —and the old lady yelling, ”That man needs help!” to the bus driver, who now stands next to me asking, “You need help?”

“Yes, get me away from her for starters,” I tell him. “Then point me due south so I can cross Foster.” He does this without question or comment.

Thus, having regained my sense of place in the universe, I progress toward my goal, wondering where I’d be if not for the kindness of strangers.

A version of this post originally appeared on Jalapeños in the Oatmeal, Jeff Flodin’s blog about digesting vision loss.

 

How One Student Who is Blind Planned the Perfect Date

Easterseals National blog readers might recall a guest post Ali Krage wrote for Valentine’s Day last year about the challenges and joys of dating someone who is blind. Lucky us — she’s back again this year with a new post about the challenges and joys of planning a date with her boyfriend.

Ali and Joe.

Ali and Joe.

by Alicia Krage

In my post here last year I talked about how being with another blind person made me more independent. My boyfriend, Joe, and I talk about doing other things on dates besides the traditional dinner date. We’d be especially interested in doing something special in Chicago.

Finding something to do in Chicago that wasn’t especially visual was difficult — and to be honest, a little discouraging. But then, suddenly, it came to me. A friend who is blind let me know once that she liked to go to Andy’s Jazz Club in Chicago. Joe absolutely loves jazz music and would be up for it, so I did some research.

I started by calling the club and asking about admission prices. After that I used a program called JAWS (Job Access With Speech) on my computer to go over the dinner menu.

Now for looking up the distance from the train station to the jazz club. Google Maps doesn’t work well with JAWS, so I used an app called VoiceOver on my iPhone for Google Maps — iPhones come with an embedded voice synthesizer for VoiceOver.

I was pretty excited after doing all this research. This would be perfect for our two year anniversary, I thought. We’d have to wait until our anniversary comes in Spring, but we could do it. Excitedly, I called Joe and ran it all by him. He agreed!

Since I had him on the phone, we proceeded to look at train times to Chicago. I’m already familiar with the closest commuter train station to the university where Joe and I go to school, and I already had train times written down and memorized. We knew that there were two shows at the jazz club, and I could already tell from the enthusiasm in Joe’s voice over the phone. He didn’t even have to say it. He wanted to go to the earlier one.

We chose a train that would get us into Chicago more than an hour before the first show. We’d arrange our cab (I used Google Maps to look up the distance) and arrive at the Jazz Club a half-hour before the first show started.

Planning all of this took some time, but I’m getting more excited with every day that passes. It’s a long way away, but with the help of some technology and by contacting my friend who’d been there before to ask her questions about the jazz club and cab companies, I feel confident this will work. We may encounter some obstacles, but it’ll be a learning experience.

 

Do we fear the blind?

With the celebration of Martin Luther King, Jr.’s birthday coming up on Monday, a colleague here at Easterseals national headquarters emailed us all this quote she found on a Friendship Circle Special Needs Blog post titled 10 Disability Awareness Lessons Learned From Dr. Martin Luther King, Jr.:

People fail to get along because they fear each other; they fear each other because they don’t know each other; they don’t know each other because they have not communicated with each other.

The quote brought to mind a piece published in The New York Times called Why Do We Fear the Blind?. The article quoted everyone from the 18th century French philosopher Denis Diderot to modern essayist Christopher Hitchens to try to explain why Blindness is the most feared and misunderstood of all disabilities.

Really? It took famous philosophers and scholars to explain this? Let’s be real. People are afraid of blindness because, well, being blind looks scary. And maybe seeing someone like me, who is blind, serves as a reminder: this could happen to you, too.

Odds aren’t great, though. Only 1.3 million people in the United States are legally blind. That’s not many. We human beings tend to be fearful of things we don’t know, though, and with so few of us out here, your chances of getting to know a person who is blind is rare.

The reporter who wrote the New York Times article put on a blindfold to try to understand what it’s like to traverse city streets when you can’t see. I’m afraid all that does is make her readers more afraid. And grateful that they are not blind. But she can go away proud that she was sensitive enough to try walking around with a blindfold in an effort to simulate being blind.

People who are blind can’t take the blindfold off and then talk about how scary it is. We spend miserably difficult months with remarkably dedicated orientation and mobility trainers learning how to do simple things, like walk outside and mail a letter.

Beth with Seeing Eye dog Whitney.

I started losing my eyesight in 1984, when I was 25 years old. Before then, I had a job advising college students who wanted to study overseas. The job entailed talking with students, checking out what programs might work for them, phoning different college departments or other universities to arrange for the transfer of college credits.

I was sure I’d be able to perform these tasks without being able to see. My boss, however, was equally sure I could not.

I tried proving her wrong. At first I didn’t use a white cane or a dog. I quit driving or riding my bike, but I could still see well enough to walk to work with a walking cane (my husband Mike and I happened to have bought one as a souvenir during our honeymoon in Scotland months before, when I could still see perfectly well).

As my eyesight got worse, I started making mistakes in the office. One morning I spilled grounds all over the floor on my way to make the morning coffee. I sat inches away from my computer screen to see the words. I ran into tabletops. At one point my boss took me aside and told me I wouldn’t be going to the annual convention with my colleagues that year. “You’ll embarrass the office,” she said.

Those were scary times.

By the end of that year, I had lost my sight completely. The Americans with Disabilities Act had not been passed yet. My contract was terminated. My confidence was shattered. How could I have been so naive? Did I really think I was worth hiring? Why would anyone employ someone who couldn’t see?

I considered pursuing a Master’s degree in blind rehabilitation then, reasoning that if you work helping blind people, being blind would be an advantage, and I might get a job. After some soul-searching, I realized that with my personality I might be able to do more for the blind community by getting outside of it.

I am not shy, and I hope that demonstrating to people who might not come across a blind person in their daily lives that a person without sight can live a full, creative, and pleasurable life will show them we’re nothing to be afraid of. The way I look at it, ahem, it’s all I can do.

 

Paid DC internships for students and recent grads with disabilities — apply now!

internshipThe United States International Council on Disabilities (USICD) is accepting applications for paid internships in Washington, DC this summer.

USICD launched its first internship program in 2013 for youth with disabilities who are interested in international development or foreign affairs careers. The program is supported by the Mitsubishi Electric America Foundation, and graduate students, recent graduates and undergraduates in their junior or senior year who have disabilities are encouraged to apply.

Participants go through a one week training course and then work with a major international development agency for eight weeks to learn more about foreign aid and development. Interns also participate in trainings and workshops on career development topics, in addition to attending meetings at the State Department and other agencies during their time in DC.

Interns will receive a limited stipend, reimbursement for travel expenses, and fully-accessible housing. The USICD web site says they anticipate that the summer 2017 interns will need to be in DC from May 28 to July 29, 2017, though these dates may be subject to change.

Applications for the summer 2017 program are due by January 10, 2017, and you can download an application here. For more details about the program, the USICD recommends you consult the “Frequently Asked Questions” section on its web site.

 

Last-minute toy ideas for kids who have disabilities

GiftChristmas is this Sunday already? Hanukah starts Sunday, too?

Yikes!

If you’re having trouble coming up with an idea for a special gift for a special kid, don’t despair. Once again this year, Toys “R” Us has published its free toy-selection guide for parents and friends of children with disabilities. The Toy Guide for Differently-Abled Kids features items that promote the development of specific skills, such as auditory, language, visual, tactile, fine motor, thinking, self-esteem and social skills.

Toys in this guide are not categorized by disability nor by age. Instead, symbols are assigned to each toy based on different skills — this way gift-givers can choose toys that build or reinforce a variety of skill sets.

Our son Gus is a young adult now and living with three other guys in a group home in Wisconsin. While most of the gifts in the Differently-Abled Toy Guide are not age appropriate, we were still able to find a perfect gift in the catalog for him this year.

Gus misses hearing our voices sometimes, so we got him a recordable Christmas book. The recordable book allows my husband and me to read and record a Christmas poem out loud to him. This way when Gus turns a page, he’ll hear us reading. Now all Mike and I have to do is sit down and make the recording…happy holidays!

 

Waiter with one eye claims discrimination

That’s a whole lotta eyeballs there looking for a home. (photo by Chuck Gullett.)

Now, here’s a new one for you.

A waiter in Mississippi was fired for refusing to wear his fake eye at work. Discrimination? I dunno. But this story strikes close to home.

Eye surgeons did all they could to restore my vision when retinopathy set in thirty years ago. One of my eyes is still intact, but the other one shrunk so much from the trauma of all those surgeries that I can’t hold that eyelid open. I wear a prosthesis in that eye.

Jared Ellis, a married father of two children, lost an eye five years ago in an accident. He told a reporter at news station WREG in Mississippi that he wore a prosthetic eye for a while, but it was so uncomfortable that it gave him headaches. Eventually he decided not to wear it at all.

I still remember the first time an oclularist (that’s what specialists who make fake eyes are called) spread open the lids to my poor shrunken eye and plopped the prosthesis in. “Okay,” she said. I could hear her wiping her hands on a paper towel. “It’s in.”

Intellectually I knew all along that the prosthesis was not meant to improve my eyesight. It was meant to improve my looks. Subconsciously, though, I must have thought this eyepiece was going to give me sight. It felt so much like the contact lenses I used to wear that for one split-second I expected to open my eyes, look in a mirror and see what I looked like with this new eye. “It looks great!” the ocularist exclaimed with pride. I faked a smile.

The eyepiece felt weird at first, as if, well, as if there was something in my eye. I’ve become used to it now. It only bothers me when dust or grit gets in there. If that happens, I take it out, clean it with regular hand soap and water, and plop it back in. I try not to do this in public restrooms, though!

Last month Ellis told reporters he didn’t wear a prosthetic eye or eye patch when he interviewed for the restaurant job or at any time he worked there. He said there’d been no mention of complaints from customers about him, and that he enjoyed his work.

A month into the job, however, a manager took Ellis aside and told him the restaurant owners wanted him either to wear a prosthetic or an eyepatch. Ellis quit on the spot, claiming discrimination.

As for me, of course it was crazy for me to ever think the fake eye would restore my vision. Not so crazy to think the fake eye would help restore my confidence. My fake eye is pretty realistic. It helps people feel more comfortable talking with me and listening to what I’m saying. With my fake eye in, it can appear I’m looking at people as they talk. They open themselves up, rather than pre-occupy themselves with my blindness. In turn, so do I.

So, what’s your guess? Which one is fake? (photo by Chuck Gullett)

If you can forgive the blind puns here, it’s pretty interesting to look at this from a different point of view. Ellis says he’d like to use his restaurant experience to send a message to others in his shoes. “It’s about everybody who’s ever looked in the mirror or had somebody tell them there’s something wrong with the way they look,” he said in the WREG report. “There’s nothing wrong with you. You are beautiful. Don’t let anyone ever tell you otherwise.”

 

A Heartfelt Year-End Thanks & Gratitude from Easterseals CEO

Randy Rutta talking to a little girl at an Eatser Seals center

Randy Rutta at an Easter Seals center

We at Eastereals have a lot to be grateful for this year … our Easterseals families, our friends, countless donors and volunteers, our staff, our advocacy and many corporate and community partners. And what better time to pause for a moment, and widely express our thanks, than during this holiday season.

Starting on #GivingTuesday, Easterseals launched its month of gratitude, with many of our clients stepping up to share their stories and literally take over our social media feeds. Take a look. We’re getting a heartfelt response from so many, and I thought I’d join in and offer up my own musings — and gratitude — from life on the inside of this 100-year-young heritage brand.

2016 was a landmark year for Easterseals. We introduced our new brand, along with other exciting changes; we celebrated the achievements of children and adults at our 75 Easterseals across the country, and we forged and fostered incredible partnerships that helped us advance our purpose to change the way the world defines and views disabilities. Here, our team has captured 16 of our top moments, in no particularly order.

I am so proud of each and every success this year, and owe a debt of gratitude to all of our friends who help make those moments, and so many more, a reality. Generous gifts — whether large or small, tried and true, or even groundbreaking in their unique approach to philanthropy – from millions of people each year drive Easterseals to make a profound, positive difference in people’s lives everyday.

I would, however, like to add a 17th moment to that list for good measure, acknowledging a game-changing social investment and effort to usher in a new Easterseals for the 21st century. Just two years from now, Easterseals will celebrate its centennial anniversary. In that lead up, Easterseals is launching a comprehensive strategic planning initiative to set far-reaching goals and a plan to achieve a bold vision for people with disabilities.

I am grateful to our supporters who make these types of efforts possible. In particular, I greatly appreciate the support of the George and Betty Harbaugh Foundation for expanding access to essential services and supports to our nation’s veterans and their families, and in 2016, making a Program-Related Investment loan to significantly strengthen our organization’s capacity to advance innovation, excellence and growth of services for people with disabilities and their families.

Easterseals recently launched a comprehensive, strategic transformation project. The path forward will engage all of Easterseals decision-makers and stakeholders — 33,000 staff, 42,000 volunteers, national/community partners, and 1.5 million people and families served this year alone. Together, with a nationally-recognized expert advisor, we’re crafting a compelling 21st century vision to affect change and positively impact exponentially more people’s lives.

It is partnerships and innovative support, like this, that make all the difference. And for that, I am forever grateful.