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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 This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Source: Easter Seals And Autism (http://www.easterseals.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.

Source: Easter Seals And Autism (http://www.easterseals.com)

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!

Source: Easter Seals And Autism (http://www.easterseals.com)

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.

Source: Easter Seals And Autism (http://www.easterseals.com)

Grateful for Goalball

I am pleased to introduce Sean Edwards as a guest blogger today. After a retinal detachment compromised the vision in his right eye when he was nine years old, doctors prohibited him from participating in sports or any other physical activity that might cause another detachment. A decade later, Sean is attending Purdue University and participates in Goalball, a sport he is grateful for. Here’s his post.

by Sean Edwards

Goal Ball Game

Erik Rodriguez of the Indy Pendants throwing the ball down the middle of the court.

I never really found sports interesting as a kid. I could watch football here and there if family was watching it. My dad even got me into watching hockey when I was 15 or so. But I couldn’t play those sports. Ha, me try to see a small, icy rubber disk that can be launched around a rink at more than 90 miles an hour? Good luck.

The script sort of flipped my junior year of high school. A resource teacher that year went out of his way to show me this unique sport made for people with a vision disability and assured me I’d be able to participate. Players all wear blindfolds, and the ball has bells inside to hear where it’s coming from. My resource teacher went on and on, and when he finally finished explaining I had only one question: what’s this game called?

Goalball.

Created after World War II as a rehabilitation method for veterans who had lost their sight in combat, Goalball is a 3-on-3 team sport that combines an offense like bowling with a defense of soccer or hockey. Teams of blindfolded players take turns rolling a hard-rubber bell-filled ball down the court at their opponents. When defending, a team will have to listen for where the ball is coming from and dive out to block the ball with their body, preventing it from entering their goal. The team with the most goals at the end of the 24-minute game wins.

We started a Goalball club at my high school and I began exploring various strategies. I learned that playing proper defense limited chances of taking a hit to the head. It didn’t take long for me to discover I did in fact have a competitive fire buried inside me.

And now I’d found a way to release it.

Since graduating from high school I’ve been attending Purdue University, and during my sophomore year at college it occurred to me that hey, we managed to create a Goalball club at Carmel High School. Let’s do it at Purdue, too.

On April 23rd, 2016, the newly-founded Purdue Goalball organization hosted its First Annual Regional Goalball Tournament. Six teams from various cities, including Indianapolis, Chicago, Detroit, and even Cincinnati, traveled to compete in West Lafayette. I witnessed first-hand what that tournament meant to the athletes who participated. They weren’t simply enjoying a chance to get physical activity — they were grateful for the opportunity to compete.

It was on that day last April that I knew. This was it, this was what I was looking for all along. I switched my major to Sociology with a minor in Disability Studies. My goal is to someday work towards raising awareness of adaptive sports and make more options and opportunities available for athletes with disabilities to participate in them. With that spirit in mind, we’re planning to host our second Goalball tournament at Purdue in April 2017.

Sometimes in life, you don’t really know what you’ve got ‘til it’s gone. And other times, you don’t really know what you could have until it falls right into your lap. I’m honestly grateful to have learned about Goalball. Not only do I appreciate it for giving me the chance to compete, but it has opened up my mind to who I want to be.

Source: Easter Seals And Autism (http://www.easterseals.com)

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