At age 100, former Easterseals director of education reflects on career helping children with disabilities

by Bridget Hayman

Beulah Moody

Beulah C. Moody, former director of education at Easterseals Western and Central Pennsylvania (previously the Easter Seals Society of Allegheny County), dedicated her 19-year career at Easterseals to helping children with disabilities achieve milestones.  This July 4, she celebrates a personal milestone of her own – her 100th birthday!

“I think we helped a lot of people,” she said, reflecting on her work at Easterseals.

She remembers one 6-year-old boy in particular, who gained an entirely new perspective:

“His mother left him lying on his bed for his first six years,” she explained. “He didn’t have any hair on the back of his head because it was always against a bed or the floor.  When he came to us, we did a huge amount of work with him, and attached him to a therapy board. We hoisted the board up, so that for the first time in his life, he was vertical. And the look that came into his eyes when he saw the world from that point of view – almost as if he was standing – was something I will never forget.”

Known more formally as “Mrs. Moody” to her staff, she earned a Master’s of Education from the University of Pittsburgh at age 58. She then began to teach at Easterseals, and eventually became the director of education, retiring in 1986.  As she put it: “My husband and I both worked until we were 70. I think the secret of a good long life is to keep busy, and stay aware of what is going on in the world.”

Through it all, Mrs. Moody was known for her razor-sharp focus and unwavering dedication to provide quality services to the people who came to Easterseals for support.

Rosemary Smith, former director of the speech pathology department, remembers:

“[Mrs. Moody] was June Cleaver when she was married. But when she came to work, she wasn’t June Cleaver any more. When she became director of education, my gosh, there was no fooling around. She wasn’t wasting her time, your time or the kids’ time.”

Her former assistant, Gerry Burchick, also recalls her no-nonsense attitude, which shined through the very first time she officially met her:

“She had a very stern appearance. Everyone was afraid of her. And one day she approached me and asked me to work for her. I said, ‘OK, but I don’t want to get coffee for you.’ And she said, ‘Fine. I’ll get your coffee. How do you take it?’”

Mrs. Moody remains just as focused today as she was during her Easterseals days. She reads the New York Times daily, and then completes the crossword puzzle in ink. She also leads a book group, takes a pottery class and helps underserved populations in her community.

Her recollections of her 100 years of life are a collage of humor, museum-quality detail, and the peaks and valleys of an American life, most of it spent in the 20^th Century. 

“I was born during the First World War,” she said. “I waited four years during World War II for the man I married and worried about my son during the Vietnam War. There have been a few bumps and bruises along the way, but now, under the care of my loving son, his beautiful wife and my precious grandchildren, I would say it has been a beautiful life, and still is.”

Thank you, Mrs. Moody, for your service to Easterseals and to people with disabilities.  Happy Birthday!

Staged: a ‘seeing-eye dog’ scene

by Beth Finke

I’m trying something new this summer, taking this weekly play writing class at Victory Gardens Theater in Chicago.

Over the course of 10 weekly 3-hour sessions that start on June 4, 2016, students will explore the process of creating a 2-minute play in the Too Much Light style, writing and crafting pieces based on true life experiences. The class will introduce tenets of honesty, brevity, audience connection and random chance, and will examine specific play formulas and styles that recur on stage– including monologues, object theatre, and even the difficult shortie play. The workshop culminates in a student-written performance of Too Much Light at Victory Gardens on August 13th, presented and performed for the public. In partnership with Victory Gardens’ Artist Development Workshop, Intro to TML at VG offers an opportunity to study the fundamentals of Neo-Futurism in a physically accessible setting, with accommodations provided for any student with a disability. Artists with disabilities are strongly encouraged to apply, and will be given preference in acceptance into the workshop. (The class is open to everyone; however we will strive to maintain a majority of artists with disabilities in the class.)

My Seeing Eye dog sure stays calm during flights!.

Without being able to see the other participants, I’m not sure how many of us have disabilities. The first day of class, though, a voice rang out at about my height and requested I pull Whitney completely under the chair I was sitting in. “I don’t want to run over her!” Aha! That classmate uses a wheelchair.

We all got to work right away on our first day. Introductions, exercises to help us relax, exercises to loosen up, a game to inspire creative word choice, then free writing — we wrote continuously for five minutes, without worrying about spelling or grammar. Topic: Something I Feel Strongly About.

After five minutes of free writing we took a 15-minute break. Then we got right back at it. Teachers read a few Too Much Light monologues out loud for us. We discussed ways those writers utilized good word choice, unexpected props, and unique staging to make their one-person play more interesting. Our homework? Transform our free writing “Something I Feel Strongly About” exercise into a two-minute monologue based on a true-life experience. We’d each use a prop and unique staging to perform our monologue in class the next week.

My free writing exercise betrayed my disgust with people who fake or lie about a disability to pass their pet off as a service dog. My Seeing Eye dog Whitney served as my prop and I took suggestions from the teachers about staging. Writing the monologue was fairly easy. Memorizing it? Miserable. Performing it in front of my classmates? Painful! More on memorizing without being able to read print and performing without being able to see the audience in a future blog post. For today, I’ll leave you here with my monologue script:

Scene opens with a person sitting in a straight back chair, an empty chair right behind that person, me standing and holding the back of the empty chair, my Seeing Eye dog at my side.

Me: My Seeing Eye dog leads me down the jet way and onto the plane whenever I fly somewhere. When we get to our seat, I sit down first.

I sit down in the empty seat.

Me: Then I tell her to lie down.

I point to the ground and give Whitney the “down” command.

Me: I picture her like a pile of logs.

I lean down and start shoving Whitney underneath the seat in front of me. Thanks to that person’s weight in the chair, it stays still while I squeeze Whitney under. I say the next lines while continuing to get her situated.

Me: I shove shove shove her back under the seat in front of me. She sighs a sad surrender and lays her head between my shoes.

Whitney does that.

Me: One time while I was leaning down to get Wonder Dog all situated the teenager sitting next to me tapped my back and said she had, like, this really, like, funny story to tell me. I brushed my hand over Wonder Dog’s distressed leather harness one last time to make sure her flat back was completely under the seat.

I Brush my hand over Whitney’s harness.

Me: My fingers spidered over to curl her tail under, too…

I spider my fingers down to Whitney’s tail and remain down there checking her out during the next couple lines.

Me: …so it wouldn’t get run over by the shaky drink cart. Finally confident that Wonder Dog was safe and sound, I scratched her nose and sat up for the funny story.

I scratch Whitney’s nose, and once I’m confident she’s under, I sit up again to deliver the next lines.

Me: The teenager told me she was traveling alone. She told me she was an only child. She told me she had a dog. She told me her German Shepherd was like a brother to her. She told me they hated to leave her brother at home when they traveled.

She told me her dad came up with an answer. “My dad wears sunglasses,” she said. “He, like, acts like he’s, like blind.” The teenager was laughing so hard she could hardly tell the rest. You know, about how her dad, like, had somebody at the leather shop, like, make one of those, like, harness things for Rusty. “He pretends Rusty’s a Seeing Eye dog and, like, brings him on the plane,” she said. “Can you, like, believe that?”

I lean down again to make sure Whitney is still secure under the seat in front of me. I stay down there with her to deliver the last two-word line.

Me: I could.

Some are born great: a review of A.B.L.E.’s production of Twelfth Night

by Beth Finke

Photos taken by Michael Brosilow courtesy of Chicago Shakespeare Theater

We’re pleased to have Carolyn Alessio as a guest blogger today. Carolyn teaches English at Cristo Rey Jesuit High School in Chicago, and her work has appeared in The Chicago Tribune, The Pushcart Prize Anthology, and Brain, Child. Her novel manuscript was a finalist for the PEN/Bellwether Prize for socially engaged fiction.

by Carolyn Alessio

“Some are born great, some achieve greatness, and some have greatness thrust upon them.” This quote from Shakespeare’s Twelfth Night is often used to inspire strength in serious situations, but it actually comes from a hilarious moment in the play. The A.B.L.E. Ensemble’s performance of Twelfth Night I went to at the Chicago Shakespeare Theater featured actors who embody greatness on and off stage and boast some impressive comedic skills as well.

A.B.L.E., which stands for Artists Breaking Limits & Expectations, includes 20 teen actors with Down syndrome and other developmental special needs. During the play, facilitators and teaching artists dressed in black assist the actors with lines while the actors concentrate on their characters and physical expressions. Founder and Director Katie Yohe cleverly demonstrated the method before the play began by offering the audience a line to repeat–about putting away all our cell phones and cameras during the performance.

At first I wondered if the assistants might distract from the overall acting, or if the audience might not get to hear the actors’ distinct voices. Once the play started, I realized that several of the actors had already memorized their lines (through a rigorous practice schedule), and we had plenty of opportunities to hear the actors’ individual voices.

Many people with Down syndrome have anatomical differences in their oral cavity and facial muscles, and sometimes their words can be difficult to decipher. But almost everyone has trouble with Elizabethan English at first! At the play I found myself enjoying the words uttered twice–interpreted so differently, so passionately. The whole interaction reminded me of Portia’s lovely speech in The Merchant of Venice, in which she says that the “quality” of mercy is “twice blessed: It blesseth him that gives and him that takes.”

The actors’ physical “voices” also shone throughout the production. The role of Malvolio was a perfect vehicle for several A.B.L.E. actors. Written as a character who is a priggish servant to Countess Olivia, he is duped into believing that his boss secretly loves him and wants him to wear absurd, cross-gartered yellow stockings. Three different actors shared the part, and all showed great timing. Ben Collins, a 19-year-old ensemble veteran, hammed it up expertly, hopping around with one yellow-stockinged leg in the air. The audience exploded with laughter.

Versatility and adaptability are second-nature for these actors. Actor Lucy Walsh, another veteran, confidently played a whopping four roles including Feste, the clown. In the resplendent musical numbers that opened and closed the show, on-stage musicians played ukulele and guitar while the young actors swayed together, sang, blew kisses to the audience, and mixed in dance moves. One inventive actress even captured the creative, mischievous spirit of the play by briefly dancing “The Swim.”

The ensemble will start work on their second original feature film, The Spy Who Knew Me in August. A.B.L.E. describes it on their Hatchfund site like this:

Set among the high stakes game of international espionage, The Spy Who Knew Me follows a cast of 20 actors with Down syndrome as they struggle to stay true to who they really are in a world that wants them to be someone else.

The promising project is being funded by donations via Hatchfund.

Learning to teach people to travel independently on public transportation

by Donna Smith

Kristi McLaughlin, Project Action

I am pleased to introduce Kristi McLaughlin as a guest blogger today. Kristi is the Project Manager for Easterseals Project Action Consulting and is the primary mover and shaker behind getting our certification program off the ground.

by Kristi McLaughlin

If you’re anything like me, you may have had a fear of public transportation prior to taking the plunge into the world of buses and trains. Maybe you’re still experiencing this uncertainty and haven’t yet crossed that bridge. Or maybe you’ve mastered buses and trains, but haven’t yet ventured out to try a new mode of transportation, like Uber or Lyft.

Regardless of your comfort level, there are important skills that must be learned in order to travel on any public transportation vehicle. Public transit riders need to have a minimum level of physical, cognitive and social skills to safely access public transportation. The particular skills may vary based on the mode of transportation, the accessibility of the transit agency and the accessibility of the community in general. Functional skills to ride public transit include, but are not limited to:

• being able to get to the transit pickup location
• navigating various terrain
• boarding and exiting vehicles
• paying fare
• navigating through various environmental conditions like snow and ice
• handling unexpected situations
• traveling safely in the community.

The professional field that teaches these independent travel skills to people with disabilities and older adults is called travel training. If you had asked me 15 years ago what a travel trainer did my answer would be that it was probably a person that helped schedule transportation or make travel arrangements similarly to a travel agent.

I was completely in the dark.

In my defense, it is a relatively new field that’s been around for approximately 30 years or so, but it is growing rapidly. Travel trainers can be found in just about any organization with the shared goal of independent travel for those they serve — school systems, public transit, human service and older adult agencies, non-profit and for-profit agencies alike.

Easterseals Project Action Consulting (ESPAC) has been working to increase and improve accessible transportation in local communities for more than 25 years. We’re happy to be one of the few organizations teaching the important skills needed by travel trainers to improve the independent travel skills of those they work with. In this vein, ESPAC has developed a robust professional development certification program for travel trainers. Our certified travel training instructor program (ctti) includes coursework covering all the essentials for travel trainers.

Visit the CTTI page on our web site for more information on becoming a certified travel training instructor. You can check out our schedule of future training opportunities there, too, and link here to register.

News flash: people with disabilities have sex lives

by Beth Finke

Who could resist an invite to a panel discussion called “Disability and Sexuality: Everything you wanted to know about disability and sex but were afraid to ask…?”

That’s Bethany Stevens.

I sure couldn’t.

The panel took place at Access Living (a non-profit organization in Chicago for people with disabilities) and was promoted like this:

A panel of “sexperts” will join our guest speaker, Bethany Stevens, J.D., M.A. (blogger of Crip Confessions) for a juicy, frank and sexy conversation about CripSex!

The promotional material also teased, ahem, that before the panel started, “disability-sex-friendly businesses will join us for a CripSex fair, providing free goodies and important information.”

I made sure to get there before the panel.

My Seeing Eye dog Whitney led me into the “Crip Sex Fair,” pulled me forward about ten or twelve feet, and then suddenly stopped. I figured we were at a table, but I was reluctant to reach out and discover what “goodies” were laying there. I finally mustered up the courage, stretched my arm out to grope the goodies, and felt…the push handles of a wheelchair! We weren’t at a table at all. We were in line to talk to a saleswoman from one of the “sex-disability-friendly” businesses there.

I eavesdropped on the woman in that wheelchair, of course. When she reached the front of the line, I heard her using halting speech to compliment the saleswoman. “I love your store,” she said. I paid close attention to understand every word, and I’m quite sure I heard her say she’d celebrated her 18th birthday by going to that shop with a friend.

I won’t disclose what she was looking for there, but I can tell you that staff members helped her find what she wanted. “They actually wanted me to take my time and look around — they said I could stay as long as I wanted,” she marveled. “You all were nicer to me than the people at Wal-Mart.”

The saleswoman sounded pleased. “I’m really happy to hear that,” she said. “We train our staff to be open to people with all sorts of needs.” I didn’t hear any of the people from the sex-disability-friendly businesses mention devices or toys made especially for people with disabilities, just a lot of talk on things they sold that might be easier to use than others or could be adjusted to fit a person’s particular needs.

The CripSex Fair was only open one hour. I picked up a free goodie before they closed, and just like the old classic movies used to do, I’m going to leave the intimate details about that to your imagination.

Time for the panel discussion. Only two panelists: Sergio Tundo from Chicago House (a social service agency serving individuals and families disenfranchised by HIV/AIDS) and Bethany Stevens, a faculty member at Georgia State University who studies, teaches and writes about disability and sexuality. Bethany has brittle bone disease and uses a wheelchair. Sergio never said anything about having a disability himself, and without being able to see him, I couldn’t tell.

The panel discussion was promoted to people with disabilities of any sort, but the focus was really on people with physical disabilities. They gathered cards with questions from the audience, and Bethany announced that the questions fell into three categories. “Raise your hands or make noise for the category you’re most interested in learning about,” she said, listing the three as:

• Relationships
• Nuts & bolts, or
• Miscellaneous

The panelists sounded as surprised as I was when the audience chose “Miscellaneous,” but they just shrugged and took it from there.

“Since we have people here with expertise in things like sex workers and other ways of doing things, this first question is an important one,” Bethany said. “What is the best way to start a conversation with your personal care assistant or personal assistant agency about sex facilitation?”

In the end, most of the questions in the “miscellaneous” pile had to do with personal care assistants:

• If you’ve been using the same personal care assistant for a long time, and you like them, and you know they will probably not be open or comfortable with helping you with this, should you even bring it up?
• How does it affect interaction if there is a need for another person to assist in the sexual experience, but that third party is not sexually involved with the other two?
• If two people with physical disabilities would need an able-bodied person to help them move, how does that third person behave in the relationship?
• What are some of the best practices for facilitating the experience if you are the personal care assistant?

I didn’t hear one lewd comment after these questions were asked, and not one titter, either. I did hear some answers, and learned about some new ideas, too. Example: San Francisco is working on a program similar to e-harmony to match people with disabilities and personal care assistants. The person who needs the P.C.A. spells out what they need, the personal care assistant fills out a form describing the services they are willing to offer, and you match up that way. Others shared things that have worked for them –- and things that haven’t. I was really glad I went that night and thought the whole thing was pretty cool: people together, talking frankly, sharing stories and offering suggestions.

Innovative students from Segal Design Institute work to make sewing accessible

by Beth Finke

Remember the 9-year-old who wrote a post here for Valentine’s Day about how much she loves her Dad? A lot has happened to DJ Mermaid since that post was published in February. Most importantly, she had a birthday. Our ten-year-old guest blogger has been in a casting program the past couple months, and you can read this post to discover how she came up with her pen name “DJ Mermaid.”

DJ Mermaid still has casts from her hips down to her ankles on both legs, and she’s told me many times that she “doesn’t let her physical disability stop her from doing anything she wants to do.” Her guest post today proves exactly that.

Sew Good Students

by DJ Mermaid

Hey guys, DJ Mermaid here! I’ve gotten back on the guest-blogging trail and I thought this post would be a good way to start off.

Just a couple of weeks ago, I participated in a program with Segal Design Institute at Northwestern University. This is a program dedicated to creative design that changes people’s lives for the better. I requested something that would help me with sewing. Two groups of students were assigned to help me with the following problems:

1. Driving the fabric efficiently through the sewing machine
2. Creating an innovative way to use the pedal

I am unable to use the foot pedal because it’s hard to push with my foot. I usually put the foot pedal on the table and use my hands while mom drives the fabric through the machine. The groups came up with two different solutions.

Solution One: Sew Good

• The Sew Good group came up with a guide constructed of metal to help me drive the fabric. All I had to do was pushpin the fabric onto the guide and keep my hands on the frame in case the fabric started veering off.
  

  That’s the feed control box designed by the Sew Good group.

• The Sew Good group also created a way for me to use the “foot pedal” with my hands. The students created a box that was able to go to three different speeds simply by turning a knob. The best part about it was that it kept going at a consistent speed I set without any adjustments. The students also painted the box pink and purple. I like those colors. They even used glitter for the writing. I was wowed!

Solution Two: SewMates

• The SewMates group made a voice operated sewing “pedal” — it’s a box I plug into the sewing machine. The box has wires and a chip to record and receive my commands. The students had to use coding to program the commands. The commands are “Robot, Go, Slow, Slower, Fast, Faster and Stop.” I speak into a little microphone on the box, and, magically, the sewing machine goes. It is high tech and I am impressed that they used coding. Coding is awesome, and I do it all the time!

Last Saturday I was eager to try them out. They worked! I sewed a headband by myself with very limited assistance from mom.

And then, guess what? Mom broke the sewing machine. Nice Going, Mom! It may be a while before I am able to try my devices again!

Well, that’s a wrap!

-DJ Mermaid

A life worth living — Veterans Affairs analyst finds fulfillment with support

by Beth Finke

Just like me, Sue Martin uses a Seeing Eye dog to get around safely. Sue’s blindness is not the result of some eye disease or genetic condition, though. It’s the result of a suicide attempt.

Sue works for The United States Department of Veterans Affairs as a management analyst now, and though I’ve never met her face-to-face, I know her virtually—she shares her assistive technology know-how online and is a huge help whenever my speech synthesizer stumps me.

The Veterans Health Administration’s Office of Health Information asked Sue to write a guest post outlining ways Veterans Affairs is helping make people more aware of suicide warning signs and risk. She opens the post explaining that when she was 26 years old, she was so depressed that she thought she had no other option than a loaded gun. “There was an explosion and, in an instant, my world went dark,” she writes. “I didn’t die, but the failed attempt left me blind.”

Thirty years of rehab, therapy, and support from friends and family have brought Sue to a point where she is willing to share her story in hopes it might help others who believe life is not worth living. She is happily married and describes her work at Veteran’s Affairs as “fast-paced and exciting.” Instead of facing each day with dread the way she did all those years ago, she says she greets each day in anticipation of what she might discover.

Sue Martin is deservedly proud of what she’s made of her life, and extremely grateful to the people who helped her along the way. “I didn’t do it in a vacuum,” she says. “The important thing, if you feel your life is not worth living, is to talk about it and get help.”

Disability-focused movies are nothing new, but where are the actors with disabilities?

by Beth Finke

I lost my sight when I was 26 years old. After that, I pretty much quit going to movies.

I can still picture movies I saw on TV or at movie theaters before then, though, and it surprises me now to think how many of them happen to center on disabilities. Some examples:

• In Coming Home (1978) Jon Voight won an Oscar for playing a veteran who was paralyzed in the Vietnam War.
• In An Affair to Remember (1957) Deborah Kerr’s romantic rendezvous with Cary Grant is nearly derailed by a paralyzing accident.
• In A Patch of Blue (1965) Elizabeth Hartman is a blind white woman who falls in love with a black man played by Sidney Poitier.
• In Butterflies Are Free (1972) Edward Albert is a blind man attempting to break free from his over-protective mother.
• In Johnny Belinda (1948) Jane Wyman is referred to as a “deaf-mute.”
• In The Miracle Worker (1962) Anne Bancroft stars as Annie Sullivan and Patty Duke as Helen Keller.

As you can see, ahem, disability-focused movies are nothing new. But wouldn’t you think by now, it being the 21st Century and all, far more movies would feature actors and actresses who actually have disabilities themselves? In all the movies I watched when I could still see, I can only think of one where an actor with a disability played a character with a disability: The Best Years of Our Lives (1946) featured Harold Russell (a real-life veteran who lost both hands when a defective fuse detonated an explosive he was handling) as a World War II veteran home from the war. Actress Marlee Matlin is deaf, and of course she won best actress for her role in Children of a Lesser God, but I wasn’t able to see that one – it came out in 1987, a year after I lost my sight.

There must be plenty of actors out there with disabilities who are looking for work. Can it be true that it’s been nearly 30 years since a major motion picture featured an actor or actress who has a disability? Please leave a comment and tell me I’m wrong!

Frank Lloyd Wright Trust makes architecture accessible to all

by Beth Finke

Guess who spent a Saturday afternoon last year playing the very same piano architect Frank Lloyd Wright practiced on 100+ years ago?

Me!

The Frank Lloyd Wright Trust was one of 31 cultural organizations that partnered with Chicago’s ADA 25 for 25 Cultural Access Project last year. To celebrate the 25th anniversary of the Americans with Disabilities Act in 2015, the trust offered special ASL and touch-tours of its historic sites.

The goal of the 25 for 25 Project was to help at least 25 cultural organizations in Chicago commit to improving accessibility for visitors with disabilities in 2015 in some concrete way, and then put plans in place to continue to take steps to improve accessibility after the 2015 anniversary year.

The success of last year’s tours motivated the Frank Lloyd Wright Trust to continue offering accessible programming, and last week Laura Dodd, the trust’s Director of Operations and Guest Experience, emailed me and forwarded a thank-you letter she’d just received from an exchange student from Poland who is blind and got to tour some pretty special houses. “I want to share a proud moment,” Laura said, and I was glad she did.

Monica also visited Robie House in Chicago — in addition to taking the Oak Park tour.

Here’s the back story: Monika Dubiel had contacted Laura after completing a semester at University of North Carolina. She’d be visiting friends of her parents in Oak Park, Illinois when the Wright Plus house walk (an annual event where private home owners open their homes to visitors) would be going on and wanted to know if there might be some way she could take in the house tours, too.

Laura told me that in the past she wouldn’t have been able to make this kind of accommodation with only a weeks notice — or even a month’s notice. “But with all the things I learned {from 25 for 25} and the confidence I have gained, we easily said yes to her request.” I was so moved by the thank you note Monica wrote to Laura afterward that I contacted the young woman directly to ask permission to share her note with you Easterseals blog readers. Here it is:

Dear Laura,
I write to you to thank you for the marvelous opportunity that you
gave me to enjoy the architecture of Frank Lloyd Wright and his friends. The house walk this past Saturday was an amazing and unforgettable experience for me.

I especially would like to say thank you to the trainee who helped us all day by telling us about the places we were visiting. She spent the whole day navigating us from house to house and dealing with house captains private tours. Also, all the volunteers in the houses were very nice and open minded.

In some houses, I could touch whatever I wanted because the owners were there and they gave their personal permission. It was incredible to feel all the furniture and decorations.

I’m so glad that I could do that. You can’t imagine how grateful I am.

I also would like to ask about visiting the Frank Lloyd Wright House and Studio and the Robie House. We talked about me coming this coming Saturday, but it turns out that I will be in Hyde Park on Thursday, next to Robbie House. So I would like to ask if I can visit it on Thursday.

I hope you have a good day.

Best regards,

Monika Dubiel

Monica did indeed get a chance to visit both the Robie House and the Frank Lloyd Wright House and Studio. I’m not sure she got to play Wright’s piano, but I’m confident she enjoyed those two touch tours as much as I did when they debuted last year. Thank you, Frank Lloyd Wright Trust, for continuing to make architecture accessible to all.

Monica is off to Washington D.C. now to do an internship at the Polish embassy, where she’ll probably know more about Frank Lloyd Wright than anyone else working there. zpiecznej podróży!

Political ad features candidate’s son with cerebral palsy: Exploitative or empowering?

by Beth Finke

A political ad in New Hampshire features a candidate with a son who has cerebral palsy. Is the ad exploitative? Or empowering? For an answer, I went to an expert: the mom of a daughter who has a similar disability.

by Deana Herrman

New Hampshire governor Maggie Hassan is running for senator. A campaign ad came out last month featuring her 25-year-old son Ben, who has cerebral palsy. Can we first agree that it was nice to watch a political ad where no one was belittled?

I watched the ad a few times. I had mixed feelings because I watched it each time with what felt like a different identity — a mom of a ten-year-old daughter who has a similar disability to Ben’s, an advocate, a healthcare worker and a skeptic who is sick of the tone and actions of politicians.

Governor Hassan’s ad tells the story of why she got involved in public service. I bet a lot of parents of kids with special needs can relate to that. I appreciate her story. It’s important for people to hear stories of parents of children with disabilities. It encourages sharing, gives parents a support community and may encourage others to get involved as well. Good for her for being involved and having this drive her so far into public service.

Honestly, children cannot always advocate right away for themselves, and as parents, one of our first jobs is making sure our children are supported. Some have called this ad exploitative saying that it takes advantage of her son. I think she is allowed to own every part of being Ben’s mom, including the part about being motivated to get involved as a result of raising him. After all, it helps define part of who she is.

Is this ad “inspiration porn?” Maybe. I don’t know the extent of Ben’s abilities. If it were Ben on camera telling us how great his mom is or telling his own story, would we judge the ad the same way? I can see how someone who has a disability might look at this ad and think that Hassan is using this story to show how everyone “helped” Ben without shedding light on any of the issues facing the disability community.

That said, Ben inspired her to get involved. Is there a way to tell her story without using her son? Probably not — especially if getting him what he needed was her main reason for entering community service and politics in the first place.

In the ad, Governor Hassan says, “That’s one of the reasons I got involved in public service, because it made it so clear to me how much you can accomplish when you work together.” It actually sounds to me like the collaborative efforts around raising her son are what inspired her to want to work with others in the same manner, even in the political arena.

Yes, she doesn’t have Ben’s disability, but isn’t it natural that his disability affects his parents and siblings? I can see how our daughter inspires/influences our son’s actions and vice versa. It’s just what happens living in a family.

In order to advance any progress for people with disabilities, doesn’t the greater community need to be aware and to be involved? To me, there are broader topics to discuss in an election year — topics like: When does the disability community make an impact in this (any) election? When does disability get discussed by politicians without tit being linked to healthcare? I wonder if Ben can vote — a big issue for people with disabilities. I wonder, if Ben saw that ad, would he vote for his mom? Or would he just want to go join a community service organization?

Perhaps rather than critiquing or lauding this ad, opponents and supporters can collaborate as Maggie Hassan did and use it as a platform to bring awareness to some of the disability issues that are getting ignored: voting rights, funding of IDEA, enforcement of ADA, equal pay, unemployment. Pick a topic — there is more work to be done!