Love is Blind: A Series on Long-Distance Relationships during COVID-19

Ali, a young woman with short brown and wavy hair smiling with boyfriend Juan, turned slightly towards her, also smiling. They are sitting on a bench and each has an arm around one another.Some of you might remember a 3-part series I wrote in January about flying to Houston to visit a friend. That friend is now my boyfriend.

Juan and I go way back. We met in September 2005. I was in sixth grade, and he was 19 and a fifth-year senior (that’s what they called it in the vision department at school). Fifth year seniors graduated like everybody else in their school but then stayed an extra year to focus on vocational goals. One of Juan’s goals at the time was teaching Spanish to blind and visually impaired students. I happened to be taking a mainstream Spanish class and could use all the help I could get, so he was assigned to tutor me. And when our middle and high schools realized they didn’t have enough people to field individual Goalball teams, they combined them and we did goalball together.

We didn’t keep in regular contact much after that, especially after I went to the Illinois School for the Visually Impaired, a residential school hours away from our homes in the Chicago suburbs. Juan and I texted on each other’s birthdays and would call every few months just to catch up. Then his father took a job in Houston, his family moved to Texas, and Juan joined them there in 2016.

Fast forward to 2019. Juan was back to visit family and friends, and I was invited to join some of them on a beautiful September day in Chicago. I found myself observing the way he interacted with me, with the people around us, with Uber drivers, and customer service. I observed his confidence, his outgoing personality, the way he spoke of his passions. The way he talked about what it was like to move from Illinois to Texas, the way he tackled all the research to find resources there…all of it. And I thought, “I think I kind of like him. This is someone I could see myself with.”

But I wasn’t sure.

A week later, I drummed up the courage to text him. “I want to make sure I actually like you,” I wrote. “That I’m not just single and like the idea of a person.” I told him I was still figuring out my feelings. When he wrote me back, he said he was doing that very same thing. He added that during the day in Chicago we’d both been observing each other without the other knowing it. Because he was just about to board his flight, the conversation stalled after that. A few days later, he called me to revisit the conversation, and that’s when he told me that his next visit would be in November for my birthday and asked if he could take me on a date.

Great minds think alike, I suppose.

That phone call about taking me on a date came just 11 days after our time together with other friends in Chicago. I was excited, but skeptical. I’d never known anyone to plan so far in advance. I waited for a cancelation that didn’t come.

We went on our first date on November 17, 2019. Then, since he had flown to Chicago to celebrate my birthday, I flew to Houston in January 2020 to visit and celebrate his — you already know about that from a blog post I wrote this past February, 2020. Sometimes I think I like someone and then I spend a lot of time with them and…realize I don’t actually like them.

That didn’t happen this time.

Stay tuned for part two of Ali’s four-part series on how long-distance relationships can work – and thrive — during a pandemic.

Read Part 2 of this series!

 

October is Disability Employment Awareness month: Meet an Architect Who is Totally blind

Hands trace over a piece of paper with raised markings depicting the structure of a buildingOctober is Disability Employment Awareness month, and last weekend’s feature on 60 Minutes about an architect who says losing his sight made him better at his job is a perfect example of how resourceful people with disabilities are at work.

Chris Downey had been a working architect in San Francisco for years before 2008, when surgery to treat a brain tumor left him blind at the age of 45. He said he was so familiar with the city that within six months he was back at work and using a white cane to commute to the office on his own. The 60 Minutes story didn’t answer all my questions about how he works as an architect without being able to see anymore, but I did find an interview at The Architect’s Newspaper where Downey explains how he uses wax tools called wikki stix to sketch embossed plans. Maybe they showed that in the 60 Minutes feature without describing it out loud? Anyway, in that same Architect’s Newspaper interview, Downey described one of the first projects he worked on after losing his sight: a Polytrauma and Blind Rehabilitation Center for the Department of Veterans Affairs in Palo Alto.

“The client and the team were becoming aware that they really didn’t understand how space and architecture would be experienced and managed by users who would not see the building,” he said. “When I showed up as a newly blinded architect with 20 years of experience, there seemed an opportunity to bridge that gap.” The fact that he was a rookie at being blind was a bonus. He said, “I was not that far removed from the experience of the veterans who were dealing with their new vision loss.”

Eight short years later, Downey has his own business consulting on design for people who are blind and visually impaired. In addition to the VA project in Pal Alto, he has worked on renovations of housing for people who are blind in New York City and consulted on the Transbay Transit Center in San Francisco. He teaches periodically for the University of California, Berkeley, Department of Architecture, serves on the California Commission on Disability Access and chairs the Board of Directors for the Lighthouse for the Blind in San Francisco. He also speaks internationally about disability and design.

I did hear the famous architect speak once — virtually. Chris Downey’s TED Talk includes one part where he says urban planners who think of people who are blind as prototypical city dwellers will come up with design elements that make life better for everyone, whether sighted or not:

  • a rich walkable array of predictable sidewalks
  • no cars
  • many options and choices at the street level
  • a robust, accessible, well-connected transit system

I lost my sight in 1985. Since then, my husband Mike and I have lived in a college town (Urbana, IL), a Chicago suburb (Geneva, IL), an ocean town (Nags Head, NC), and a big city (Chicago). We have loved each place for different reasons, and for me, our 15-plus years in Chicago have rewarded me with fantastic job opportunities (moderating this blog, leading memoir-writing classes for older adults, and giving presentations at schools and civic events) and an unequaled sense of independence. I have to agree with Chris Downey when he says keeping accessibility in mind when designing urban architecture really can make things better…for everyone.

 

Count us In: October 31st is the Last Day for the 2020 U.S. Census

Edited 10/5/2020: The Census was extended once again to October 31st. 

Edited 10/1/2020: The Census was extended to October 5th.

The United States has counted its population every ten years since 1790 — it’s mandated by the United States Constitution. A strong proponent of the census way back then, James Madison, figured the only way public officials could “rest their arguments on facts, instead of assertions and conjectures” was if the official count of the population was as accurate and complete as possible. Which means, hey: let’s make sure all of us with disabilities are counted, too! Here’s why:

  • Transportation. Communities use census data when planning for public transit routes, upgrades and changes. Billions of dollars in federal funds are distributed for transportation projects, including public transit, accessible pedestrian signals, and truncated domes at intersections. We need all of those things to assure we can get around safely. The funding each state gets is based on census data. If we are not counted, that could mean less money for our cities and states for these projects. We need to be counted.
  • Health and Social Services. States receive billions of federal dollars to support a wide variety of programs, including funding for services we use that are specifically for people with disabilities. We need to be counted.
  • Representation. The number of people who respond in our communities and states will determine the number of electoral votes we get to help choose who becomes president, the number of seats our state gets in the U.S. House of Representatives, and how the congressional and state legislative districts are drawn. We need to be counted.

After previously stating the census would run through October 31, the bureau announced it was cutting the count short by a month, moving the deadline for responding to the 2020 Census up to October 5th, 2020. This year, while the world faces the impact of COVID-19, people with disabilities need to be counted. More than ever.

My husband can see and in the past he filled out the form for the two of us. This year I was able to fill our form out on my own. The 2020 Census Fact Sheet reports that the 2020 online questionnaire follows the latest Website Accessibility Content Guidelines for people with disabilities. If I could fill out our census form, you can do it, too! Visit https://my2020census.gov now, before it’s too late.

 

Making Online Speech Therapy Work: Tips from an Expert

speech therapist guest blogger Marsha Boyer, woman with shoulder length brown hair, glasses and warm smileHere it is! Part Two of speech-language pathologist Marsha Boyer’s guest blog about teletherapy. The owner of Speech Connections, Inc in Indianapolis, Marsha says she’s seen countless changes in the Speech and Language therapy field over her 27-year career, ”but the year 2020 has brought a new meaning to the word ‘change!’” In Part one of her Education and Parenting guest post, she described how she, the children she serves and their parents made the switch from face-to-face therapy to tele-therapy while sheltering in place. Today she offers tips for speech-language pathologist and parents for the new school year.

by Marsha Boyer, M.A.,CCC-SLP

I believe I speak for most speech-language pathologists and parents when I say that in the early stages of the pandemic we were using what resources we had and trying our best to continue with services. Now that we have had some time to take a step back and assess what we’ve accomplished so far, we can look at making a few adjustments to improve the delivery of services. I’ve learned a lot in the last six months or so, and today I’m sharing my tips to help speech-language pathologists and parents get the most benefit out of your tele-therapy sessions.

Parents:

  1. Try to use a large screen device or computer, and check for good internet connection. Tablets and phones are sometimes what are available when parents also have to be online for work, but I have found these devices often do not allow clients to interact with online activities. Also, find websites that help you check your internet speed and quality.
  2. Keep nearby distractions to a minimum. Siblings and pets are great topics for us to talk about but sometimes they are doing things that draw attention away from the speech therapist.
  3. Finish up those snacks and meals before meeting. Though I would rather have them happy than “hangry”, we lose some quality therapy time while they are eating, leaving me to stand by waiting.
  4. Set up your child in front of the camera so that your speech therapist can see their entire face. Hearing their speech through a speaker often does not allow me to hear those subtle changes. If I also have the visual component, the two together help me make a better assessment of how they are doing.

At this point in the year, most speech-language pathologists have had some experience with tele-therapy and most likely have materials and routines all set. My advice to speech pathologists at this point is to stay true to your style of therapy as much as you can to maintain some normality. For instance, though green screen activities are engaging, if that was not part of your skill set before the pandemic you may not want to tackle that yet. Annotating PDFs and using interactive learning games can address goals just as well. Here are a few additional tips to take your online sessions up a notch.

Speech-Language Pathologists:

  1. Have an external microphone and use headphones or earbuds while meeting with a child.
  2. Plan ahead for creative ways to engage very young children. We all know preschoolers can be unpredictable, but if you have a general idea of how you want to address a particular goal, you reduce the need to scramble for a way to pull in their attention. Even a simple hide and seek game where you ask a parent to help them hide an object while they turn off video, then back on for you to look around and ask them “where did you hide it?” This type of simple activity is great for working on answering questions.
  3. Consider a healthy mix of direct therapy from you and parent/child observation. Parents are happy to help facilitate and be a part of the session, but not all parents are at the same readiness level when it comes to being the leader. To a speech therapist, the parent/child interaction can be valuable information, but several parents I’ve spoken with have expressed feelings of stress and lack of confidence when asked to play with their child while the speech therapist watches and adds tips for drawing out specific skills.
  4. Go the extra mile now and again. I use a specific program for stuttering which involves the child keeping a set of cards that explain their fluency “tools.” I don’t ask the parent to print out these cards at home. Instead, I laminate the cards and send them by mail to their home. I include some fun stickers as encouragement, too, and discovered that kids get really excited about receiving mail with their name on it. Now I make encouragement packages a part of my practice for all of the clients I see.

Whether you’re a parent or a speech therapist, I hope my tips help you get more out of your therapy sessions!

 

Today is National Voter Registration Day! Are You Registered?

The United States General Election will be here before you know it: Tuesday, Nov. 3, 2020, to be exact. Ballots across the country will be cast and counted that day, and in order to participate, you must be registered to vote.

A healthy democracy requires active citizenship and civic participation from everyone, including those of us with disabilities. We are a vital part of the communities where we live, work and play, and voting is foundational to being an engaged citizen. Every election, whether local, state or federal, helps determine the laws that govern us, the programs and support services available to us and the elected officials who represent us on every level of government. We all need to vote – this year and every year – to make sure we all have a voice in shaping our futures.

There is concern this year that because of COVID-19, many people with disabilities risk not having their voices heard in the 2020 election. To ensure that people with disabilities are a powerful force in our democracy, we need to register!

National Voter Registration Day is a nonpartisan civic holiday celebrating democracy. This year, it is important to register early and vote early if you can! Go to the National Voter Registration Day‘s voter help page to learn about voter registration deadlines by state, voting times and locations, whether or not you’re eligible, and more. To learn about voting rights for people with disabilities, election information and how to encourage your friends and family to vote, visit Easterseals’ voting resource page.

 

Education and Parenting: Online Speech and Language Therapy, Part one

speech therapist guest blogger Marsha Boyer, woman with shoulder length brown hair, glasses and warm smileI am pleased to introduce speech-language pathologist Marsha Boyer as today’s “Education and Parenting” guest blogger. The owner of Speech Connections, Inc in Indianapolis, Marsha has seen countless Changes in the Speech and Language therapy field over her 27-year career. ”But the year 2020 has brought a new meaning to the word ‘change,’” she says, describing in this guest post how she, the children she serves and their parents are managing the switch from face-to-face therapy to tele-therapy.

by Marsha Boyer, M.A.,CCC-SLP

After Governor Eric Holcomb directed Indiana schools to close back in March, I got to work structuring online sessions that would be as close to the face-to-face appointment structure as possible. The number of children in my private practice caseload pales compared to my counter parts in the school setting, but I do encounter young children with hearing loss and hearing aids, children with genetic syndromes, Apraxia, stuttering, and Autism, to name a few.

These children typically have an Individualized Education Plan (IEP) identifying deficits their speech language pathologist have determined are impacting the child’s education. Things were changing so quickly in March that I only had one short weekend to plan for the switch from face-to-face therapy style to online. Granted,one weekend is not enough time to wrap your head around providing quality services under a completely new structure, but I felt compelled to do what I could. School therapy was non-existent while school systems drew up policies and procedures for tele-therapy, and my clients needed to keep momentum going with their speech and language goals.

Many face to face therapy routines I’ve used for years vanished into thin air when we switched to tele-therapy. Without being able to work together physically and manipulate objects together, what would we talk about? How would I help clients who need tactile guidance to show them how to make a sound or to explore a toy? I needed high-interest lessons and activities. Educational videos and songs, too.

Where to find these? Go to the experts: fellow speech-language pathologists!

While searching for online therapy materials and creative lessons, I came across a Facebook group of speech-language pathologists who had been tele-therapists even before the pandemic. To be successful in this field, you must learn to come up with creative, adaptive ways to teach a skill or engage a child. Their tips and resources were extremely helpful when I was trying to hit the ground running. Thanks in large part to them –and to the children I serve and their parents — I’ve been leading tele-therapy sessions for months now.

Stay tuned for part two of this post, where speech language-pathologist Marsha Boyer shares tips to help parents make the most of their child’s tele-therapy sessions.

 

Educating and Parenting: The Struggle to Learn Remotely

a young child is writing in a notebook in front of a laptop that shows a video their teacherIn his introduction to a story on NPR a few weeks back, Morning Edition host David Greene pointed out that here in the United States, more than 7 million school children receive special education services. “But this spring, many of those vital services, like physical therapy, simply stopped,” he said. “So what happens now with some districts planning to continue remote learning in the fall?” To answer that question, NPR took an approach like we’ve been taking with our Education and Parenting blogs lately. Just like us, they went to experts: the parents of the children with disabilities.

The story features a Minnesota mom with a third grader who struggles with auditory processing, and a mom in Rhode Island whose son has cerebral palsy and a cluster of other conditions.

The mom with the third-grader said her daughter had a hard time keeping up with teacher’s using an iPad. “They’d tell her, you know, look at this problem, look at that problem, no, show me your worksheet…” she said. “I mean, the teachers were doing the best they could, but all those rapid verbal directions just overwhelmed her.” The result? Her daughter has gone from loving school to dreading it.

The boy in Rhode Island who has cerebral palsy loves school but got little of the therapy he needed last spring while school was online only. His mother, a single parent, needs him to be in school this fall so she can work. But how can she send him to school if it’s going to be a health risk? “One more mistake could land him in the hospital,” she says, worrying that a hospital stay like that could be fatal.

Like so many other COVID-related stories these days, this one offered few solutions. That said, I was pleased that NPR found the issue important enough to give it air time. The reporter ended the story by explaining that a handful of lawsuits have been filed by parents and advocates around the country arguing that schools broke federal disability law by providing insufficient services in the spring. “Disability rights experts say this fall, schools have to do better for the parents who are angry or ready to give up, for the schools that know they could face legal consequences if they don’t, and, most importantly, for the kids for whom remote learning wasn’t just inconvenient or boring, but a painful absence of vital care for months that could set them back for years.”

Stay tuned to the Easterseals National blog for a two-part Education and Parenting post by a speech-language pathologist doing all she can to treat the young children in her practice remotely.

 

Education and Parenting: We Don’t Have to Operate by the Old Rules Anymore

I am pleased to introduce Deana Herrman as our featured Education and Parenting guest blogger today. The mother of two, Deana is a disability advocate and healthcare worker who is working on a PhD in disability studies at University of Illinois Chicago. Her daughter Anja uses a wheelchair and started her freshman year of high school last week. “In her bedroom,” Deana explains. “Her school is full remote.” In her guest post today, Deana welcomes parents of non-disabled children to a world of uncertainty when it comes to having their kids back in school.

Deana Herrman and her daughter Anja

Deana Herrman with her daughter Anja

An Open Letter to Parents of Non-Disabled Kids

by Deana Herrman

Dear parents of non-disabled kids frustrated about school reopening plans,

Welcome.

COVID-19 school re-opening plans are challenging for parents. Maybe school has always been a safe and fun space for your child before this. Light and productive interactions with teachers got students exactly what they needed, and relationships with fellow parents were easy.

Now, everything is different.

Fear that school is not going to do what’s best for student learning, not having a way to appropriately interact with students or not having the right equipment to promote learning are new worries.
School is this weird mess of tech that may or may not work, and quick ins-and-outs of the building for check-ins, supplies, and visits are not guaranteed. Enrolling a kid in school now is a new and unpaved path to form relationships between educators, administrators and communities.

Parents are left to manage it all. Parents don’t know what to tell kids to expect. Parents aren’t sure where and when to push on administrators, school boards and teachers and when to back off. Parents don’t get immediate answers from schools or get answers they don’t like; answers filled with uncertainty or a “we’re doing our best” assurances.

Welcome to our world.

For parents of kids with disabilities, this uncertainty isn’t so new. Navigating a school system with a kid with a disability, particularly if you are not disabled, means you cannot really tell your kid what school will be like for them. You can never tell them with all honesty that it’s going to be okay and that school is a safe space for them. How would we know? We have never experienced school as a disabled person. And parents of non-disabled children have never gone to school during a pandemic, either.

Those of us who have children with disabilities are likely to have dealt with conversations of loneliness and strained relationships as a result of school policies before. We’ve been working around limited access to technology long before COVID. Not knowing what is around the corner for your kid, feeling like the school may not be doing what’s best, wrestling with feelings of anger or distrust at the district while still trying to show support when the school gets it right — we have been there. Knowing when to let your child handle school challenges with teachers, policies or course work on their own and when to jump in is not easy.

COVID has made the environment impossible for a school to operate as it did previously, affecting the majority of students now, not just a minority of disabled students. The majority of our kids are now subject to an imperfect environment and policies that are confusing. No one can function optimally in it.

Students with disabilities have been operating in an imperfect school environment for years. Parents of children with disabilities have been making it up since our kids entered school. But… we don’t have to operate by the old rules anymore.

Reopen, hybrid, full remote? Who knows? Can we start over? Let’s throw out what didn’t work & put new guidelines and expectations in place. Let’s bring in all the voices and perspectives so we are not continuing to ignore those who don’t always have a seat at the table. As everything is restructured, let’s consider students with disabilities alongside their peers right from the start, not afterwards like was done before. Now, with everything in flux, this is an opportunity for parents of children with all abilities to work together, look at what we were doing before & re-imagine how we can do it better.

 

Education and Parenting: What eLearning Taught Me About Our Daughter

The new school year is starting, and this one is going to be a doozy. With that in mind, we’re centering our blog posts this month on education. You might recognize our first featured guest blogger: Patty O’Machel is a writer, special needs advocate and mom who has been writing guest posts for Easterseals for years now.

Our New Normal – E-Learning

by Patty O’Machel

Patty and her daughter outside on a sunny day

Patty (right) and her daughter (left)

The new normal is a challenge for everyone, not just parents like myself who are raising children with disabilities. And in this disability parenting club, I have found our new normals do not look like everyone else’s.

I know mine doesn’t!

During this past spring of online learning from home, I discovered so, so much about this girl I am raising: things that, prior to this, were hidden in her relationships at school. Her relationships with her teachers and her aides are incredibly special and she had surrounded herself with people who see her potential and made her thrive with independence.

She and I never had this relationship. As much as I try, I am always her safe place. Her person to reach for for help, even when she doesn’t need it.

We started that new journey with me making her cry several times a day, as I didn’t know the rhythm yet or the dance we needed to do. She would look at me with her big, brown eyes silently pleading for me to help her and I would get frustrated because I knew she could do it herself.

She is so smart, and so competent. I struggled for a way to change our mom/daughter relationship into the new teacher/aide/student one. Even with her teachers explaining over and over that her current straight A’s as a Freshman could not go down in this corona home learning situation, she still wanted to be at the table by 9:00 and work diligently to get every piece of work done — sometimes turning in work early. Some things I realized from all of this:

    • She is incredibly smart
    • She can do the work — if she would just see herself through the lenses of everyone around her
    • She LOVES to learn
    • She NEEDS to feel she has a purpose and that things are expected of her
    • She wants to use her brain
    • She is great at algebra and physics which she did not get from me!

By far the most important lesson I learned? That before this past spring, I’d been holding her back. I am holding her back. I should have asked more of her at home. I should have given her responsibilities like her siblings. I should have expected her to be a contributing member of this family. She wants and craves being needed like everyone else does.

E-Learning is long, and I have to write for her and sometimes type for her if her voice to text technology doesn’t work. I have to watch the teachers algebra and physics videos to understand even a bit of what she is trying to do. I have to go back and be a freshman in high school, and believe me, I never wanted to do that again!

But I have also learned to see my capable, smart, inquisitive daughter in a whole new way. So another win for this tricky time we are now living in.

As this new school year begins, Patty O’Machel is gearing up to bring her company, Educating Outside The Lines, to more schools through eLearning. Educating Outside the Lines promotes the idea that children with all abilities need to be accepted and seen for their unique gifts, as varied as they are. To see Educating Outside The Lines in action, this link has a short video of programming.

 

Show Them We Count: Census 2020 Cuts Deadline Back to September 30

"United States Census 2020" logoAfter years of being overlooked and disregarded, we’re going in the right direction: Diversity has become a buzz word this past year. When people talk about “diversity,” though, the conversation is often limited to ethnicity, race, religion and sexuality.

Let’s use the census as an example. Early this year, the U.S. Census Bureau expanded its massive multimedia advertising campaign on television, radio, newspapers, online – even billboards and bus stops. A press release claims the Census Bureau is “committed to reaching those people who are historically undercounted,” but if that’s true, where are the ads reaching out to people with disabilities?

The U. S. Census Bureau press release says they tested their 2020 ad campaign in over 120 focus groups in their target audiences across the country “to ensure relatability, understanding, cultural relevance, and language interpretation.” Link here to view Examples of 2020 Census ads. I could only listen to the ads — blindness prevents me from taking them in completely,so I might be missing something. So you tell me: are any of them directed to people with disabilities? Does the U.S. Census care if we respond? Do we matter?

In 2010, the official census form every American received in the mail was not available in an accessible format. People who were blind or had visual impairments were told to ask someone we know to help us fill out a census questionnaire, visit a Questionnaire Assistance Center where a paid Census Bureau staff member could help us, or call a toll free number that was available between 8:00 a.m. and 9:00 p.m. 7 days a week.

My husband can see, and he filled out the form for us in 2010.

This year I was able to fill our form out on my own. You can do so too by visiting https://my2020census.gov. The 2020 Census Fact Sheet reports that the 2020 online questionnaire follows the latest Website Accessibility Content Guidelines (WACG) and that Braille and large print guides can also be provided for those who prefer responding by U.S. mail.

Why do I care about all this? Why is it so important for me, a person with a disability, to be counted? Why do I want the government to think we matter enough to come up with an ad encouraging us to make sure we’re counted, too? Here’s why:

  • Transportation. My community uses census data when planning for public transit routes, upgrades and changes. Billions of dollars in federal funds are distributed for transportation projects, including public transit, accessible pedestrian signals, and truncated domes at intersections. I need all of those things to get around the city safely. The funding our state gets is based on census data. If I am not counted, that could mean less money for my city and state for these projects. I need to be counted.
  • Health and Social Services. My state receives billions of federal dollars to support a wide variety of programs, including funding for services I use that are specifically for people with blindness and vision loss. I need to be counted.
  • Representation. The number of people who respond in my community and state will determine the number of Electoral votes we get to help choose who becomes president, the number of seats our state gets in the U.S. House of Representatives, and how the congressional and state legislative districts are drawn. I need to be counted.

After previously stating the census would run through October 31, last week the bureau announced it was cutting the count short by a month, moving the deadline for responding to the 2020 Census up to September 30, 2020. We may not be included in the U.S. Census Bureau’s ad campaign, but This year, while the world faces the impact of COVID-19, people with disabilities need to be counted. More than ever.