The Difference Medicaid Makes for My Family

Here’s another guest post about how changes in Medicaid could affect the people we love and care about. This one is written by my husband, Mike Knezovich.

by Mike Knezovich

Meet Gus, our son.

Our little man with his mom.

He’s 30. He laughs heartily when I sing to him in a Louis Armstrong voice. He loves music, especially stuff that has unusual rhythms—Prince is a favorite. He doesn’t seem to be able to see very well straight ahead, but he manages with his peripheral vision. And he knows Beth’s voice and my bearded face.

He can’t talk. He can kinda’ walk with assistance. And he wears diapers. He lives in a group home in Watertown, Wisconsin.
Gus was born with a genetic anomaly called trisomy 12-p. Pretty rare. The only literature we found at the time said he was unlikely to reach age 30. But he did. I’m proud of him. And of us. And of my fellow Americans who made it possible.

By the time Gus reached age 16 he was mobile and strong enough for it to be a safety issue for him and for us. We were lucky to find Bethesda Lutheran Communities. It’s a religiously affiliated non-profit that runs the group home our son lives in. It gets donations. But it can’t do what it does without help from the broader community—like Medicaid and other programs.

Gus needs help with everything. And he gets it. From salt-of-the-earth-people who make, essentially, the minimum wage. Medicaid helps pay for that. But barely enough. Bethesda is in the midst of financial struggles, as are lots of such agencies across the country.

Gus gets medical care from providers who accept Medicaid. It’s hard finding providers in some fields—like dentistry—but overall, compared to a couple of his housemates, he’s fortunate to not need a lot of specialists’ care.

I want you to trust me on this. I’m a pretty smart person. I love my son. I’ve watched closely. No one’s getting rich off of others’ labors in this equation.

Gus is served by a Wisconsin program called Family Care, which is essentially a kind of HMO for people like him. Family Care administers Medicaid funds and pays the group home operators, and oversees the operators, and looks after Gus’ care, and communicates with us about his health and any behavioral issues. Family Care does a very good job. We always hear pronto from Sarah, who’s a lead at the home where he lives, if anything is amiss with Gus.

Beth and I have always worked. We’ve paid a lot of taxes. But even if we were totally frugal, we couldn’t cover the cost of Gus’ care. And though we’re both sort of healthy, we haven’t been able to provide that care directly for a long while now.

I’ve worked at non-profits, at government-supported institutions of higher education, at startups, and at Fortune 500 companies. I’m here to tell you, they’re all a mess. They’re a collection of humans being humanly clumsy. They all rely on enough people trying to do the right thing. If not enough of those people are in the right places at the right time trying to do the right thing, failures ensue. Government. Private sector. Doesn’t matter.

There are worthwhile discussions to be had about the devils in the details of programs like Medicaid, Medicare, etc. I’m not a rigid ideologue. Everything can work better than it does.

But we’re not having that discussion anymore.

Awhile back I wrote an essay about how when bad things happen you can feel pretty alone. And about the value of understanding that you’re not.

Right now I’m feeling pretty alone. So are a boatload of other people.

I hope you’ll speak up and prove us wrong.

Join us in telling the U.S. Senate: No Cuts, No Caps to Medicaid. Start by calling your state senators to oppose the cuts and caps to Medicaid using our call script with additional talking points. Share stories, like this one, that show the impact of Medicaid on people with disabilities and their families. Also be sure to check out our Medicaid hub to learn more about the Senate health care bill.

 

How I Answer “How Was Your Father’s Day?”

Last week we published a very powerful post by guest blogger Keith Hammond about how kids who have disabilities will lose out if proposals to cut Medicaid leave American schools unable to get reimbursed for the costs of providing a free and appropriate public education. Sunday was Father’s Day, and Keith is back with a poignant guest blog about celebrating the holiday — or not.

Keith and his kids

Keith and his kids, Hillary (left) and Steven (right)

by Keith Hammond

When you have two children with autism, holidays can like Father’s Day can be hard. Children with autism largely benefit from specific and predictable schedules, and holidays disrupt those routines. Traditional places in the routine (school or various fast food establishments, for example) are often closed. Holidays involve strange expectations — spending time with people who aren’t familiar, visiting new locales, eating unknown foods — and they often involve rituals that can be loud and anxiety-producing (Don’t even get me started on fireworks).

And so, with all the celebrating that took place over the weekend, you might wonder what Father’s Day is like when you have children with autism.

Well, it’s…different.

The best I can do is share a recent example to illustrate. I’m needed at home at night for my son Steven’s evening medicines, his shower, and getting him to bed. Steven also needs me on weekends when his time is unstructured. So, when I want to spend time with my own dad — something most men wouldn’t have to worry about — I need to take a day off work.

So that’s what I did a couple weeks ago. I took a vacation day to take my father out to a movie while my son Steven was at school.

My dad and I share interest in James Bond and Marvel movies, so we ended up at a matinee performance of Guardians of the Galaxy II. We saw the first Guardians movie together back in 2014, and my dad loved Rocket Raccoon. So we were back for the sequel. It did not disappoint.

Part of the plot of the movie involves the leader of the Guardians, Star-Lord, being introduced to a father he has never met. This father, Ego, finds Star-Lord, and they are transported to Ego’s planet where the pair hope to get acquainted. It’s a bit of a rough go at first, but in a tender moment evocative of Kevin Costner’s Field of Dreams, Star-Lord and Ego play catch with a ball. The scene signifies that the two of them are bonding as father and son.

For many in the audience, this poignant scene evokes memories of playing catch with their fathers and the good times of days past. Since I was there with my father, it did bring back some very fine feelings of nostalgia.

But then, my thoughts turned to myself and my son, Steven. We’ve never tossed a ball like that. We certainly tried, but due to some of his special needs, it’s hard for him to catch, and even harder for him to throw.

So there I am, sitting in a movie theater, watching Star-Lord and his father laughing and playing catch, and it hits me: that will never be me and my son.

The tears began to fall.

Thankfully, the scene eventually switched back to the talking raccoon shooting the place up and making jokes! That broke the mood, and it all became good, clean fun again.

There’s a saying in the autism world: “What screws us up most in life is the picture in our head of how it is supposed to be.” Holidays tend to be large reminders of how it is supposed to be, and for me, Father’s Day in particular never lives up to its expectations. I hear what others are doing that day. I see their smiling father-and-son pictures on Facebook: trips to the ballpark or to nice restaurants. Many of these folks are my friends, and I try to be happy for all of them.

Certainly, I do love my children just how they are. Still, something goes on in the back of my mind that leaves me wondering. Why can’t it be like that for us, for Steven and me? Does there have to be a special day to point out how different we are? Why?

These of course are questions that may never be answered. The holiday is over, and I’m back at work, back to being busy with life, the chores, and my children. Inevitably someone will ask, “Did you enjoy your Father’s Day?”

All I can do is smile and say, “It was just fine, thanks.”

Read more stories from Keith Hammond about being a dad to two kids with autism:

Here’s Who Loses Out if Medicaid Funding is Cut

What a Broken iPad Taught One Dad About Parenting

 

The Issue That Needs More Attention in the Health Care Debate

As Chief Executive Officer at Easterseals Southeastern Wisconsin I have the privilege of meeting many people with disabilities and their loved ones. I’ll never forget the day one of our clients, a woman with a spinal cord injury, came to share her own story with our Board of Directors. Janice started her story describing day after day lying in bed in a nursing home, depressed and alone, no hope for the future. But that was before she met her “Easterseals dream team.” With a glowing smile, Janice outlined all the help she received from staff here at Easterseals Southeastern Wisconsin to find services funded by Medicaid. Those Medicaid services helped her see a brighter future.

The American Health Care Act is garnering a lot of attention lately. Both the Affordable Care Act and the American Health Care Act have amazing reach. Health care is over 15% of our National Gross Domestic Product. Health care is getting more expensive and concerns us all, especially as our population ages. But as the political debate rages and the voices get louder, one issue has received far too little attention.

Medicaid.

When you think of Medicaid, you picture a hospital, right? Doctors and nurses attending to a patient? Well, that’s not what I see.

When I saw Janice at our board meeting, I saw a middle aged woman in a wheelchair that receives personal care in her home, not in a nursing home. I see young people with disabilities moving into their first home away for their parents. I see a young person earning her first paycheck.

Medicaid is all these things. It allows people with disabilities to access their communities, live with greater independence and avoid long stays in nursing homes. Community options like these can be more cost-effective than institutions. All of them provide quality care and build a more inclusive community. All these services rely on Medicaid funding.

Janice is able to live independently again in an apartment where she can be with her family. The smile on Janice’s face as she spoke with our Board of Directors lit up our conference room. Janice is just one of hundreds of thousands of Medicaid success stories of greater independence and better quality of life.

Medicaid many times does not cover the full cost of a person’s care, so organizations like Easterseals rely on donors to bridge the gap. Philanthropy cannot bridge these gaps forever. Further cuts will erode local organizations, and that will lead to cutbacks and reductions in services to people with disabilities who rely on them.

So, if like me, you believe all people should have greater independence and a chance to contribute to our community, join your voices with ours at Easterseals and oppose cuts to Medicaid.

Easterseals also has a list of resources available on how to contact your representatives, including images you can use on social media to #SaveMedicaid.

 

Medicaid is My Lifeline

Erin Hawley

Erin Hawley

Almost every morning, a personal nurse gets me up and dressed so I’m ready for work. They assist me with eating, toileting, and keeping my airway open – the basic necessities of life. When I don’t have a nurse, my parents and boyfriend take over those duties, ensuring my ability to live in the community rather than a nursing home or other institution. Medicaid pays for my nurses and the medical supplies I need – paying for these out-of-pocket would cost more than my entire paycheck. And without my nurses and med supplies, I could not live how I choose to live, and how I must live. My happiness and well-being shouldn’t be contingent on whether or not I can afford healthcare.

The drastic cuts to Medicaid in the AHCA would be a disaster for anyone receiving services under the program, and low-income disabled people would be the hardest hit. In many states, Medicaid is already on a strict budget; further cutting that budget puts states in a difficult position of denying its citizens the care they need to thrive in the community. Low-income individuals already struggle to stay afloat, and losing personal care assistance, medication coverage, or access to a physician could lead to worsening health or even death. This is not hyperbole; states that rejected Medicaid expansion made their citizens suffer, possibly leading to over 7,000 deaths. Cutting Medicaid further would simply put more lives on the line. The program may not be perfect as many still don’t receive as much care as they need, but the answer is not pulling funds to an already underfunded system.

The Senate needs to make the right decision, and side with their constituents who would suffer under the AHCA. Cutting Medicaid would also endanger the programs at Easterseals that give people with disabilities the freedom to live independently, go to work, attend school, or find a community of friends. The AHCA would endanger all ages, from babies to seniors. And if you don’t think it’ll affect you, remember that you or a loved one could become disabled at any time and require the services Medicaid provides. Even if you are not directly affected by the AHCA, someone you know probably is, regardless if they speak about it publicly. We can’t prosper as individuals or as a society if a portion of its citizens are literally fighting for their lives.

I am asking that you call your senators or send them emails asking them to protect Medicaid. Easterseals has a list of resources available on how to contact your representatives, including images you can use on social media to further this cause. Let’s work together to #SaveMedicaid.

 

Here’s Who Loses Out if Medicaid Funding is Cut

I am so pleased to have Keith Hammond back as a guest blogger today. Keith is a manager at the adult day services program at Easterseals Serving Greater Cincinnati and the father of two children. Here he is with a story about his daughter, Hillary.

by Keith Hammond

Keith (left) and his daughter, Hillary (middle)

The young women in my daughter Hillary’s senior chorus concert last month performed a spirited rendition of ABBA’s “Dancing Queen.” This lead to a fun discussion with my daughter where I informed her that I was familiar with this song and described the quartet that originally sang it. Of course, ABBA had the original song back in the late 70’s, and Hillary had not been Bjorn yet (forgive me, I don’t get to do ABBA puns very often).

This high school performance was different for Hillary, though. She is diagnosed with autism. As a child, when her peers began speaking, she did not. It took her years longer to say her first word, which, sadly was not a word that any parent would want to be their child’s first. Note to parents: Nonverbal children do hear you.

What came naturally to her peers, Hillary had to work harder to achieve. It took years of speech therapy, years where every weekend, evening, and holiday was filled with Applied Behavior Analysis (ABA) activities designed to encourage sounds, speech, and rehearsing what to say in situations. Hillary has spent every year in school in a social skills group designed to help her and kids like her learn how to interact and speak with others — all things that come naturally to most children. All things most parents take for granted.

Those therapies and interactions are expensive. The average family with a child with autism can expect to spend $60,000 more per year on average for treatment than parents with typically developing children. That’s their own money, not insurance, not Medicaid, nothing else. Every bit of assistance is crucial for children with autism, particularly since they see the vast majority of their progress during their pre-school and school age years.

I’ll give you an example.

When Hillary was about six or seven, her cousin Emily began attending a preschool at a local church. Hillary had language at this point, but it was often distorted and didn’t sound much like the original word. Thus, when we spoke about Emily going to the “Lutheran School,” Hillary pronounced it as the “Loser School.”

“Loser School” did not sit very well with Cousin Emily.

Hillary was going to a private speech therapist for extra therapy at the time, so I explained the situation to the therapist and asked if she could help Hillary pronounce “Lutheran” properly and mollify her cousin. Her response? “Loser School…That’s pretty funny!”

My response? “I’m not paying $80 an hour to hear how funny that is.” Yes, you read that right. Speech therapy was $80 an hour back in 2005. I’ll bet it’s closer to $100 an hour now, likely more. We were very fortunate. Not everyone can afford that.

And that is why the intervention services provided at American schools as part of a free and appropriate education are so essential and so crucial. It may be all some children can get, it may be all some families can afford.

In the House of Representatives in Washington, there have been recent proposals to sharply and drastically reduce Medicaid dollars. With those reductions, they are proposing that schools no longer be considered Medicaid-approved providers, meaning that schools would no longer be reimbursed for the costs required to provide a free and appropriate public education to all children. These are funds that support the speech therapists, the occupational therapists, the physical therapists, and the intervention specialists that assist children with autism and other disabilities to learn to speak, to interact with others, to do jobs in our community, and ultimately to become fully participating members of our society. Without those Medicaid funds, these professionals and services can’t be funded in many schools. What will happen to the many children who so desperately need them?

Hearing my daughter singing with the other young ladies her age at the chorus performance last month got me thinking. Without Medicaid funding, the school staff who helped her, and the services she received in school, I’m not sure she would have been there with her peers singing “Dancing Queen.” Her voice would be absent and silent.

Multiply that by the many others just like her who need those services, staff, and Medicaid funds in order to be included with their peers — They could all be absent from the stage. We can’t let that happen in a civilized country. We need to let our politicians know how much cutting this crucial Medicaid funding could devastate children and families for years to come.

“Loser School?” No, Loser Society. We all lose when these voices are gone.

Read more stories from Keith Hammond about being a dad to two kids with autism:

Breaking Out of the Toilet Talk Trap

What a Broken iPad Taught One Dad About Parenting

 

A Theater Workshop That Puts Disability Center Stage

On stage

Beth and her Seeing Eye dog Whitney on stage last year.

A post I wrote about an accessible play writing class I took last summer that was geared to people with disabilities caught a blog readers eye. Or, I should say, his ears! Blog reader Bill Green has been legally blind since birth, and he was so intrigued by the idea that he signed up for the Spring 2017 course. Here he is with a guest blog about his experience in theater.

by Bill Green

The workshop I took with The Neo-Futurists this spring consisted entirely of disabled students. Everyone’s physical bodies and its limitations shape everyday experiences and interactions. No one is more acutely aware of these limitations and their influences as a disabled individual. This awareness became the core of many plays written by my fellow students and myself.

One of the fundamental tenets of The Neo-Futurist aesthetic is honesty. On stage, all performers are themselves, not characters. They portray moments, with all the humor and sorrow, from their experiences.

The workshop taught the two-minute play, a specialty of The Neo-Futurists. On the first day, we went around the room introducing ourselves. All of the other students had backgrounds in performance, were in shows, and had been paid for their performing. When it came time to introduce myself, I decided to leave out my only acting credit: Al Bo the cowboy in seventh grade.

The Neo-Futurist ensemble members who taught the class, Trevor and Jeewon, did an amazing job fostering a welcoming and comfortable environment. By the second week, we were already performing monologues that blended current events, personal experience, and a routine task. I delivered a piece about vision loss, the space program, and climate change all while dribbling a basketball. Others performed with great energy and emotion. I admired how we all stayed true to honest performance.

People shared vulnerable and daring moments from their own lives. Over the following weeks, we created more two-minute plays and participated in exercises to generate ideas. We created more monologues and ensemble pieces. Even when pieces fell short of our own goals, the class stayed constructive and positive. No idea, as long as it was honest, was too ridiculous or invalid.

The process of creating two-minute plays started with an assignment, writing at home over the next week, and then performing and workshopping our plays with the class. All that work lead to a May 1, 2017 performance on stage at Chicago’s Victory Garden Theater.

I had three of my own plays to perform. The first was the monologue using the basketball that ended with me shooting the ball into a trashcan. I also did a deconstruction of George Orwell’s 1984 using a volunteer from the audience to play a rigged game of Three Card Monte. Finally, I told the story of how I met my wife in the form of a children’s story time.

These plays gave me the chance to show and share in a concrete way what it’s like to interact with a world that is only partly seen. Only two of my plays used my visual impairment as a focus, but other students’ plays explored dealing with hearing loss, strangers’ reactions to leg braces and dealing with the stares and comments you get when living with Albinism. We found ways to create empathy with the audience.

In the end, besides the joy of working with such talented men and women, the reward of the workshop was the ability to be honest.

More posts about disability and theater:

Taking the stage — stories about life with disability

People with Disabilities Take the Stage Tomorrow at Chicago’s Victory Gardens Theater

 

Authors Can Make Book Events Accessible By Doing This

A laptop with a notebook and cell phone on the left, and a cup of coffee on the other.I am in the midst of planning book readings to promote my new book Writing Out Loud, so the timing of a new post on Brevity’s Nonfiction blog with a step-by-step guide to staging accessible online book events couldn’t be better.

Here I am, a blind author who moderates a blog for a non-profit organization for people with disabilities, and it wasn’t until I read that post that it dawned on me how non-accessible literary readings can be.

“The typical literary reading presents an obstacle course for many people with disabilities and chronic illnesses,” guest blogger Sonya Huber points out in her post. “From finding transportation and parking to staying up late to navigating stairs and chairs, every decision involves stress and difficulty.”

Huber’s new essay collection Pain Woman Takes Your Keys and Other Essays From a Nervous System deals with the twists and turns of living with chronic pain.

“I knew that I needed to find ways to connect with people with chronic pain,” she says. “I was surprised to find that an online reading was easy and fun, and I believe this is something other authors can easily do to extend their own audiences and make literary readings more accessible.”

The guest post gives step-by-step instructions for putting an accessible Facebook Live event together. Huber says she chose Facebook because she has more contact with friends and followers there, but in the end she uploaded the MP4 file to YouTube, too, where she had better luck with captioning.

“I was actually surprised at how easy this was,” Huber writes, adding that doing a book event this way “can be considered literary citizenship work aimed at broadening and diversifying our audiences.”

So who knows? Maybe I’ll try staging one of these accessible Online Readings myself. If I do, you know you can count on me to write a post here telling you all about it. Stay tuned!

 

What it Was Like to Graduate Before the Americans with Disabilities Act

A crowd of graduatesIt’s that time of year — friends and family are gathering to celebrate the new graduates in their lives. Some of the Millennials who are graduating — and all graduates from Generation Z — have no concept of life before curb cuts on sidewalks and Braille on elevator buttons. Accessible design is so common now that even older generations hardly remember public buildings that didn’t have wheelchair ramps.

That’s why I was so pleased to read an op-ed piece in the Chicago Tribune this week by author Steve Fiffer. Fiffer has written more than a dozen nonfiction books, including the memoir Three Quarters, Two Dimes, and a Nickel: A Memoir of Becoming Whole.

Fiffer graduated from law school in 1976, 14 years before the American’s with Disabilities Act was passed. Paralyzed from the neck down as a result of a wrestling injury during his senior year in high school, Fiffer was told he would never walk again but ended up moving from wheelchair to crutches. By the day he was set to graduate from University of Chicago Law School in 1976 he could maneuver with just a cane. “There was just one problem,” he writes in the op-ed. “On this sunny June day 14 years before the passage of the Americans with Disabilities Act, no one — myself included — had considered whether the graduation venue would be accessible to an American with a disability.”

Fiffer and his classmates were instructed to meet 30 minutes before the ceremony in the basement of what he describes as “one of the campus’ most iconic and least accessible edifices — stately, Gothic, elevator-free, lift-free, ramp-free Rockefeller Chapel”. He describes arriving in plenty of time to navigate the twelve stairs to the basement: “Left foot down. Cane down. Right foot down. Cane down. Rest. Repeat.” From the article:

“At the appointed time, we lined up in alphabetical order, Mr. Adams to Ms. Zelinsky. On cue, Mr. Adams and the others snaked to the stairway I’d just come down. On cue again, Mr. Adams moved with deliberate haste up the stairs. Ms. Agnew followed his precedent, then Mr. Allen and Mr. Atherton.

I quickly realized there was no way I would be able to keep up with the 20 or so classmates ahead of me as they climbed the stairs and continued on the outside route.”

Spoiler alert: Steve Fiffer did indeed receive his law degree that day, but if you want to know how he managed it, you’re going to have to link to the Chicago Tribune article to find out.

 

Disability and Attitude: How Both Affect One Man’s Worldview

I am pleased to have social worker and writer Jeff Flodin back as a guest blogger today. Jeff was diagnosed with Retinitis Pigmentosa at age 35 and is currently working on a short story collection about vision loss.

by Jeff Flodin

Jeff Flodin with his Seeing Eye dog.

Jeff Flodin with his Seeing Eye dog.

Over the years, I’ve walked almost 2,000 miles to and from work. Most trips are serene, a few stressful. My first step on every walk is to pause and take stock. I check the weather and traffic. I test that Randy’s harness is snug but not too tight. I pat my pockets for keys, iPhone, billfold and dog bags. Then I measure the most important factor I bring to my journey: My attitude.

My attitude determines whether I view the world as full of compassionate helpers or inconsiderate creeps. The constant in this equation is who’s out there; the variable is how I view them. On days I feel at ease with myself, I embrace the stranger. I walk with grace, like I just got out of church. But on days I’m immersed in self-pity, I assume all motives are sadistic. I take every real or imagined slight personally. I look for a fight and, by God, I find one. Attitude, action and reaction — the choice is mine whether I wear my blindness like a loose garment or a straightjacket.

On days I am at ease, I possess the humility to be right-sized in this world. I am a part of, rather than apart from, my fellows. On days of conflict, I carry the delusion of self-importance. I’m sure the driver who crowded me in the crosswalk waited all day and traveled a long way just to stick it to me. I’m certain the kid left his bicycle on the sidewalk so he could watch the blind man trip and fall. I just know the city worker dug up the sidewalk to confuse my guide dog. Oh, I get payback being the victim. Me, me, me becomes even more compelling when the me is wronged.

The riddle goes, “What have you got when you sober up a horse thief?” and the answer is, “A sober horse thief.” Self-pity, anger and grandiosity make me the horse thief, not blindness. For sure, blindness doesn’t help — it exacerbates the flaws I bring into play. I can’t change the blindness but I’m working on changing the flaws. My goal is progress, not perfection. So, I keep walking, keep practicing patience, tolerance and self-restraint. Today, I can greet my wife with, “I had a pretty good walk home from work today, Honey. I only yelled at one driver.” And that’s what I call progress!

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

Read more posts by Jeff:

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

The fact of the matter is, “I am blind, and blindness takes extra”

 

How Has Being a Blind Mom Changed Over the Years?

Beth and her son, Gus, when he was a baby

Beth and her son, Gus, when he was a baby.

I subscribe to a podcast by The British Broadcasting Corporation (BBC) called Ouch. It features BBC journalists with disabilities who bring their personal experiences to the table, and it can be downright charming to hear them talk about disability in their lovely British and Irish accents. It’s intriguing, too, to hear how British and Irish laws regarding disability sometimes differ from ours here in the United States.

As you might imagine, I was all ears when reporter Emma Tracey checked in from maternity leave by phone to talk to Ouch about what it’s been like to be a blind mum. I am blind, too, but it’s been so long since our son Gus was an infant that I was curious to hear about any new techniques for 21st century parents taking care of infants they can’t see.

When Gus was little I took care of other infants during the day to make some pocket money on the side. Because infants don’t move much, they are easy to keep track of. When it came time to pick them up, I’d place my hands palms down on their mattress and feel around until I found a little body. I’d feel up and down to determine whether I had arms or legs, then lift the baby to my shoulder, one hand always under the head for support.

I walked backwards with babies to get us from room to room. That way if we bumped into door frames or walls, it’d be my well-padded bottom that took the impact rather than the baby’s head.

When giving a baby a bath, I always had soap and shampoo and towels within arm’s reach so I could keep one hand on the baby while searching with the other. When babies wanted to stretch out, I’d put them on a blanket on the floor and make a rule for myself to never ever step on that blanket whether a baby is on it or not. That way I could keep toys out all the time and not worry about tripping over them — or stepping on the baby!

Most parents supplied pre-made bottles that I simply put in the microwave when the baby got hungry. And yes, I always shook the bottle afterward and checked to make sure the formula wasn’t too hot. This is one aspect of baby care where BBC’s Emma Tracey had a different approach than mine: she is breastfeeding.

“The most challenging thing about feeding for me is based on my own hang-ups, and it’s feeding in public and doing it so that I don’t flash…” she said on the podcast, explaining she always brings a little cover along to use. “I think if I were sighted I’d be a lot more brazen about it.”

She said people look at her enough anyway, “so people look at me as a person with my dog, feeling around a table at a café for my tea or whatever I happen to be doin’, so actually, in fairness, breastfeeding shouldn’t bother me, but I think I am a little bit concerned about flashing!” Emma said she doesn’t let that concern stop her from breastfeeding in public, though. “I still do it and it’s fine, it’s absolutely fine.”

Other than that, Emma Tracey uses pretty much the same tricks I used back in the late 1980s when caring for Gus and other infants. We didn’t have smart phones back then, though, so one thing new is… texting.

Emma’s baby’s name is Tadhg, which is an Irish name that sounds like the first syllable in the word Tiger. “And the interesting thing about that is, I dictate all my messages and correspondence with Siri on my iPhone, and it is the least easy name to dictate in the world!” She says every time she gets to Tadhg’s name when she’s sending a text she has to stop what she’s saying, type t-a-d-h-g on to her smartphone, and then go back to dictating. “So he gets called ‘the baby’ a lot.”

And so, there you go. A different look, ahem, at mothering from a couple of blind mums. Happy Mother’s Day!