When One Mom is Called Supermom, She Responds With This

by Beth Finke

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

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?

by Beth Finke

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

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!

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

by Beth Finke

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.

by Beth Finke

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.

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

by Alicia Krage

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.

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?

by Beth Finke

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!

by Beth Finke

The 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

by Beth Finke

Christmas 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

by Beth Finke

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.”

Six Ways Teens with Autism Spectrum Disorder and Learning Disabilities Can Help Themselves Succeed

by Bridget Hayman

Guest blogger Kelly Hutchins shares more tips for young people with Autism in today’s post, specifically those who find themselves navigating high school.  Read her first post as well.

Speaking up for yourself and making your needs known can be terrifying, but it is something you are going to need to do throughout your life. Debbie Muentnich-Hayes is a Special Ed teacher from Joliet, Illinois. She has been working with young people for over 20 years. We sat down together to brainstorm six ways for teens to advocate for themselves.

Know Your Case Manager

Your case manager is the person who helps write your Individualized Education Program (IEP), and his or her job is to advocate for your needs. If you don’t know who your case manager is, go to the special education office to find out. It is important to meet periodically with your case manager so you can communicate to them exactly what you need to succeed academically. Debbie put it best saying: “Don’t try to handle it all by yourself, you don’t have to go it alone. There are many adults in your school who have studied to be able to help you get the most from your education. Special education staff have a passion to make sure you receive the education accommodations you are entitled to by law.”

Know What Accommodations are Available

There are lots of different accommodations that may help you in school. Here are a few accommodations that might be worth exploring further:

• Seating at the front of the classroom
• Extended time for assignments and tests
• Guided notes (usually a handout where the teacher has outlined the lecture, but has left areas blank for the key concepts, facts, and figures for you to fill in) if you have trouble with note-taking
• Using a computer or tablet to take notes in class
• Alternate testing locations
• Having someone read the test questions out loud for you

Attend Your IEP meetings

Your IEP is what documents your accommodations and education plan. Every year you have an IEP meeting that determines what will be written into your IEP. It is important to attend your IEP meetings because they are a key space for self-advocacy. You get to talk face-to-face with all the people who are making decisions that affect your experience in high school. It is not unusual for your case manager, your guidance counselor, your parents, and your school social worker to all attend.  If the school year is already underway, but your accommodations aren’t working, you can ask your case manager for an IEP meeting. If you do not have an IEP, but think you need one, you can ask your guidance counselor about exploring your options.

Know Your Learning Style, and be Honest With Those Trying to Help You

Your learning style is the way in which you learn best. If you aren’t sure about your learning style, you can take a learning style inventory. You can either google it yourself (just search “learning style inventory”) and take a few quizzes, or you can ask your social worker/therapist to help you figure out your specific learning style. You might also understand a lot of your strengths and weaknesses just based on experience.

It is vital for you to be honest with yourself and others about your strengths and weaknesses. It might be embarrassing to admit that you find some things difficult, but it will make your life so much easier. It is crucial that you honestly communicate with teachers, parents, guidance counselors, therapists, social workers and case managers. Not only do these people want to help you, but it is their job to do so.

Develop Successful Strategies for Studying and Homework

There are a lot of ways you can help yourself study outside of school. Your teachers, case manager, and therapist or social worker can help you find what works for you.  Here are some of our favorite ideas:

• Using audio books if you are an auditory learner
• Have an accountability partner for study time
• Set up a good study routine and location
• Noise cancelling headphones or white noise machine (music is usually too distracting)
• Make sure to allocate enough time to study, because it will probably take you longer. This is not because you are less intelligent, but because American school systems are designed for students without learning disabilities

Take Care of Your Mental Health

Consider going to therapy or seeing a school social worker. Your case manager or guidance counselor can set you up with a social worker in school. Social workers and therapists are there to help you with all aspects of life, and will be a huge advocate for you in school. Sessions with them are safe spaces to process your feelings. The only time a social worker or therapist will break confidentiality is if you are a threat to yourself or others. In that situation they are required by law to break confidentiality in order to insure your safety.

If you are prescribed medication, take it exactly as directed. For the medication to work properly, you must follow your doctor’s instructions. Side effects in the first couple weeks of starting a new medication are normal, but if they persist or make life unmanageable, talk to your doctor. Do not stop taking any medication before consulting your doctor. Going off medication without medical supervision can be very dangerous. If you have trouble remembering to take your medication, try setting alarms on your phone and purchasing a weekly pill case, which lets you easily see if you missed a dose.