Author: williamtdarling

There is a town just north of Carbondale called DuQuoin, home to something called the DuQuoin State Fair. My whole life growing up I assumed the DuQuoin State Fair had some connection to the Illinois State Fair – perhaps it was the state fair for folks who felt it was too much to drive the four hours to Springfield. It turns out that is exactly what it is, but it has nothing to do with the Illinois State Fair at all. It is a private business that made a habit of being open the week after the Illinois State Fair, and grabbing some of the rides and atrractions in the process, who only had to move a few hours down the road to keep working. It’s a brilliant plan that I only figured out in the past few years.

The salad days for the DuQuoin State Fair were from 1957 to 1980, when it was host to a very prestigious horse race known as The Hambletonian, which is the first leg of the harness racing triple crown. The race has been around since 1926 and for most of its career it was run either in the state of New York or in Lexington, Kentucky. It’s currently run in the Meadowlands in East Rutherford, NJ. But for 23 years, up until I was 14 years old, it was held in good old DuQuoin, Illinois, population 5,761. For a few years in the late 70s, the race was broadcast live on ESPN making it, officially, the biggest sporting event in the history of southern Illinois. Of course, I didn’t realize at the time that in the late 70s, ESPN was also showing tractor pulls and dog jumping competitions — anything, really. But it was still national TV – in DuQuoin!

My criteria for attendance for concerts at the DSF boiled down to one thing: if I had ever heard of them, which was not a given. If I could name a couple of their songs, that was a more-than-sufficient resume for southern Illinois concert goers. One year I scraped together a few dollars to go see Ronnie Milsap, who had been successful enough on the country charts to have some of his records make the top 20 on the pop charts as well. He had easily cleared the bar for my patronage.

I walked into the concert that night not knowing much about him, other than he was blind and had a couple of pop hits. When it was over, it was one of the most amazing shows I’ve ever seen. I sat there mesmerized by his musical talents, by all the different styles of music he could play. By his voice. I heard country music, soul music, 50s doo-wap, big band songs — he could do it all. He even got up once and danced withone of his back up singers – lifts and tosses! I left that night a forever fan of the amazing musical talent of Ronnie Milsap, and it continues to this day.

His story is remarkable, too remarkable to recount fully. Abandoned by his mother, he was raised by his grandparents in the Smoky Mountains. He was a pupil at the North Carolina State School for the Blind in Raleigh since the age of 5, which had an incredible music program. He turned down an opportunity to be the first blind law student ever at Emory University, choosing instead a life on the road, trying to be a rock and roll singer. After ten years of trying, he found himself one night playing a gig and was told that the great Charley Pride was in the house that night. He broke from his normal set and played a couple of Charley’s hits as a tribute. After the show, Charley Pride came backstage and told Ronnie that he had a future in country music. Charley took him around Nashville to meet some folks, and the rest is history. Forty #1 hits later, Ronnie Milsap is one of the legendary country artists of all time. I’m so glad someone in his management team made him play the DuQuoin State Fair.

In his career, Ronnie Milsap was a tireless advocate of blind students learning Braille, rather than just relying on books on tape. He is huge user and advocate of assistive technology for the blind – it has always helped him stay in contact with his fans. He has been an inspiration to blind and visually impaired people all over the world.

This is one of his biggest hits, and one of my favorite songs by him. It was written by Burt Bacharach and was originally a hit for R&B singer Chuck Jackson. Ronnie took it, made it his own, and had a #1 hit with it. What other country artist could take a Burt Bacharach song to the top of the charts? Legend. Today’s Friday spotlight is the wonderful Ronnie Milsap.

Gradually, over time, we have seen more and more people with disabilities in acting roles on television and in the movies. This week, NBC Universal vowed to continue that trend by committing to audition actors with disabilities for every project, a commitment to “creating content that authentically reflects the world we live in.” NBC is the second such studio to make such a commitment, after CBS made a similar commitment in 2019. I think it is incredibly important for people with disabilities to be portrayed on screen. Just folks working, as actors.

I’ve always been a believer our attitudes toward and comfort with people with disabilities in public life is improved if they are “just there.” Not flattering or overly sentimental portrayals, just presence. My kids grew up on our street with a girl (adult woman now) who has significant developmental disabilities. Maddie is just there — she’s part of life on Bowerman Street; she’s part of life in general. There were two dozen school-age kids on our street and all of them grew up with her and learned – as is so often the case in life – that having people with disabilities around as part of your life is no big deal. They went out into world as better people for it.

This is the best step Hollywood could take, by hiring more actors with disabilities. It needs to be more than just having characters with disabilities, however. The Ruderman Family Foundation recently published a report stating that only 22% of roles portraying people with disabilities were filled by actors who were authentically disabled. My youngest daughter enjoys streaming the show Glee, which is about a high school singing club. One of the characters is a person in a wheelchair who, to my surprise, during a dream sequence one episode, arose and started dancing to Michael Jackson’s Bad. This is how I came to know that the actor was playing someone in a wheelchair, rather than an actor in a wheelchair playing a talented high school student. This was a bit disappointing. Better than nothing, but a bit disappointing all the same.

Of course, unless you are playing yourself, you are always trying to portray someone you are not. It’s called acting. And the skill set required to be on Glee is world class, so it may not be that simple to find actors in wheelchairs who fit the bill (and there is also a character on Glee with Down’s Syndrome who is being played by someone with Down’s, to their credit). I think Hollywood would do well just to consider all characters in movies and think, “Is there a reason this couldn’t be played by someone with a disability?” An actor who uses a wheelchair can’t play Jason Bourne, but there were many meaningful characters in the Bourne movies that weren’t scaling buildings, fighting bad guys, and jumping through windows.

Sometimes, when they want the person with a disability to be that guy, it gets complicated. A few years ago, Ben Affleck made a movie called “The Accountant,” about an adult with autism who is an accounting savant with the combat skills of a Green Beret. He is an off-the-books accountant for various organized crime and underworld figures, who keeps finding himself in positions of having to go on killing rampages in order for justice to prevail. It is truly a bizarre movie, finding about the oddest way imaginable to turn an accountant – and a person with high-functioning autism – into an action hero. It’s not terrible as far as action movies go, but it is troubling to watch a character with autism violently kill. It is what heroes do in these movies, but it is still unsettling. I don’t know that we’re better for it.

In the movie, he receives his synthesized, intelligence audio directives from a female character known as “The Voice,” who (spoiler alert) turns out to also be someone with a more severe form autism (and, true to form, played by someone who does not have autism). Ultimately, I think perhaps the cause of showing the talents of people with autism might have been better served if she – the brains of the outfit – had been the only person with autism in the movie, rather than having the Ben Affleck character running around killing dozens of folks.

Still, Hollywood has made progress. Several years ago, I started a library of historical Hollywood movies focused on disabilities. The history of Hollywood and disabilities is, to understate, hit and miss. There are wonderful movies like The Miracle Worker, about the relationship between Helen Keller and her teacher, Anne Sullivan. If You Could See What I Hear was a wonderful slice-of-life movie about musician Tom Sullivan. And Fear Strikes Out is a compelling look at the world of mental illness through the eyes of major league baseball player Jimmy Piersall.

Others were not so good. Some were awful. None was stranger – or worse – than the movie called Freaks, made in 1932, and starring former vaudeville performer Wallace Ford. The first sentence of the plot synopsis on Wikipedia sets the unfortunate tone for this unfortunate movie: “A conniving trapeze artist named Cleopatra seduces a carnival sideshow midget named Hans after learning of his large inheritance…” One guesses that if you just stopped right there, you’d be doing yourself a favor. And you’d be right.

The main premise of the movie is that a “normal” person couldn’t or wouldn’t fall in love with a person with dwarfism, and wouldn’t look to associate herself with the other carnival characters in the movie – the bearded lady, Siamese twins, various actors missing arms and legs, someone who is half man and half woman, and two female characters with significant developmental disabilities known as “Pinhead Pip” and “Pinhead Zip.” In my opinion it is a truly awful film, and a depressing and dreadful depiction of people with disabilities that is painful to watch, even though the characters with disabilities are, by comparison, clearly the good guys.

There is one brief, but truly memorable, scene in the movie, however. Although it has no impact on the plot – whatsoever – there is a 38-second scene (available on YouTube) where Prince Randian, an actor with no arms or legs, while listening to another character’s soliloquy, is shown going through the complex, multi-step process of lighting his own cigarette. It’s impressive. It’s the most – and perhaps only – impressive thing in this ridiculous film.

Needless to say, Hollywood has come a long way. There are far more realistic and authentic portrayals these days of people with disabilities. There are far more roles being created for and filled by people with disabilities. This is good. I applaud NBC Universal and CBS for these important steps. People with disabilities are part of life. If art imitates life, they should be part of our art, as well. Finding ways to work people with disabilities into realistic roles will make for better movies. And it will be better for all of us.

First a note of full disclosure: I have a significant bias toward Mike DeWine, for which I do not apologize. This comes in large measure by the fact that I’ve been happily married to his daughter for 28 years and am the father to six of his grandchildren. This bias didn’t matter too much when he was Lieutenant Governor from 1991-1995, or at all when he was out of politics from 2007-2011. But it matters a lot now that he’s governor, so that should always be taken into consideration on these pages.

On Tuesday, Governor DeWine laid out a plan to soon open the state’s vaccine supply to Ohio’s developmental disability population. I want to thank the governor for including people with disabiltiies in the vaccine rollout. It is critical that people with disabilities be included, as they are often more vulnerable to health problems due to the complex nature of their medical conditions. It should be stated that many Ohioans with disabilities are already being vaccinated, as people who live in congregate settings often meet the definition of a person with a disability. It is commendable that the state Department of Health has taken this next step to include those with developmental and intellectual disabilities as well.

According to the Ohio Department of Health, starting next week, those who qualify for the vaccine must have a developmental or intellectual disability and one of the following disabilities:

• Cerebral palsy
• Spina bifida
• Severe congenital heart disease
• Severe type 1 diabetes requiring hospitalization within the past year
• Inherited metabolic disorders, including phenylketonuria
• Severe neurological disorders, including epilepsy, hydrocephaly and microcephaly
• Severe genetic disorders, including Down syndrome, fragile X syndrome, Prader-Willi syndrome, Turner syndrome and muscular dystrophy
• Severe lung disease, including asthma requiring hospitalization within the past year and cystic fibrosis
• Sickle cell anemia
• Alpha and beta thalassemia
• Solid organ transplants

If you or a loved one meet this criteria, you should check with your local health department to learn of locations available to you to begin the vaccine process. More information is also available on the state’s coronavirus website, coronavirus.ohio.gov.

Based on reporting one week ago in the Washington Post, Ohio appears to be ahead of the curve when it comes to getting the vaccine to citizens with disabilities. Many states appear to be moving people with disabilities down the list of priorities. In the article in the Post, one gentleman who uses a wheelchair was not eligible because he does not live in a group home. Other states have different rules on whether caregivers (often family members) also qualify. It’s messy. Things can get complicated when you leave matters of disability determination to the states.

But rolling out the vaccine to “people with disabilities” is not as simple as it may seem on the surface. Disability is a complex construct in the human condition. The mere presence of a condition doesn’t necessarily indicate disabilty. For example, one may have a mild case of cerebral palsy and not be significantly impaired by it. Epilepsy may or may not be a disability, depending upon the severity of the condition and the impact it has on your daily life. In fact, the definition of disability in the Americans with Disabilities Act specifically stresses the impact a condition has on your activities of daily living, as opposed to just its mere presence. When attempting to prove total disability under SSI or SSDI, the list of conditions that automatically qualify you for it is very short indeed. In almost every case it comes back to the impact of the condition, not the presence of it.

Other conditions such as congenital blindness or deafness may have no impact on how susceptible these populations would be should they contract Covid19. There are many people with disabilities who would be categorized (if there were such a category) as “otherwise healthy.” If a person has a disability which does not put them at advanced risk to Covid, there is no reason they should be placed ahead of another person in a higher risk category.

I’m sure the state will do as much as possible to get as many at risk people with disabilities immunized. Many different organizations, including Disability Rights Ohio, have been meeting all along and providing input to the state. It’s important work and, as stated, not as simple as it may seem at the outset.

Again, thanks go out to Governor DeWine, to Ohio Department of Developmental Disabilities, the Ohio Department of Health, and to everyone working to make sure that people with developmental disabilities are valued, cared for, and included in this difficult time.

Great news for people with disabilities who may wish to start the new year out with a new large-screen television. According to cnet.com, Samsung announced that their new QLED and neo-QLED television models will have advanced features for those with hearing or visual disabilities.

The new features include “Closed Caption and Text,” allowing the user to move the closed captioning text, if necessary, to another part of the screen so as to not block important visual contact. I can attest to this problem, as I have spent many hours making sure the closed captioning of our YouTube videos did not obscure anything a person with a hearing impairment needed to see.

“We don’t want to exclude anyone,” Byungho Kim, of Samsung’s social contribution center in Suwon, said in a video during Samsung’s Wednesday event. “Our technology is for everyone.”

Secondly, the Samsung products have “Sign Language Zoom,” which makes it easier to enlarge the screen housing the sign language interpreter. For those fluent in sign langugage, intrepreting the gestures may not be difficult, but interpreting the words that are quickly being spelled out can be very challenging if the box-within-a-box is not sufficiently large. This features allows the user to increase the size of the box, making it easier to understand the interpreter.

New Samsung models also give the user the opportunity to change or invert the color scheme on the menu, making it easier for people with visual impairments to know their options. This will allow for greater navigation for users.

Lastly, Samsung is also working on ways to allow sign language users to turn on their televisions just by making sign language gestures. Many profoundly deaf individuals are also effectively non-verbal, so the ability to turn your “smart” TV on with your voice is not an option. Using the high definition camera and AI, the TV can no understand basic sign language commands.

Congratulations to Samsung, and thank you for starting the year off right with the new CLED and Neo QLED models.

You never know what days are going to be pivotal turning points in your life – the days that will plot your course. One of mine occurred on October 6, 1979, when I went to a college football game with my father. I was 12. On that Homecoming Saturday, Southern Illinois beat Illinois State 7-0, a detail I had forgotten until I looked it up. But it was a day I will never forget.

During the game, a player from Illinois State fumbled, and about eight guys dove on the turf for the ball. Seven of them got up. One player, wearing the maroon #30 SIU jersey, stayed down. Face down. My father, normally a talkative physician, joined the rest of McAndrew Stadium in a haunting silence. The announcer said the injured Saluki was Mark Hemphill, a player I’d never heard of before. I didn’t understand what was happening. I didn’t understand why they didn’t just help him to the sideline so they could check out his arm, or his leg, or whatever. But they just hovered around him. After ten or fifteen minutes an ambulance showed up and drove right on to the field, which I was certain was against the rules. Then they took him away on a stretcher and the game resumed. But I just sat there in a fog – wondering what had just occurred.

A week later they ran a feature in the newspaper saying that he had broken his neck and was a partial quadriplegic. He had no feeling from his chest down but could manage gross motor movements of his arms. Barring a miracle – which his family believed would come – he would never walk again. In a split second, Mark Hemphill had gone from star athlete to a person with a disability, right before my eyes. He left a dorm room in Carbondale for a rehabilitation hospital in St. Louis, his hometown.

I followed his case very closely. His care was paid for by catastrophic insurance carried by SIU for just this purpose, and his policy would end (if memory serves) after $1 million or two years, whichever came first. Mark Hemphill blew through $1 million in about 15 months. He was then left to apply for Medicaid, transferring the cost of his care to the taxpayers of Missouri. It also meant that his 24-hour care attendant would only be available to him 8 hours per day. He filed a lot of lawsuits that were unsuccessful, leaving him with a very uncertain future.

On September 13, 1980, SIU held “Mark Hemphill Day” at McAndrew Stadium. They retired his #30 jersey and all the proceeds from that game would go to Mark to help him pay his bills. And even though it was well over 90° that day, 17,150 fans showed up – the largest crowd in SIU football history. He sat in his wheelchair on the track, under the shade of a tree, due to the heat. Fans were free to go talk to him – but I couldn’t work up the nerve. I really wish I had.

Eventually Mark Hemphill settled into his new life as a person with a disability. He moved into his own apartment and took the nearly $35,000 raised from “Mark Hemphill Day” and purchased an accessible van, one where you controlled the ramp and all the electronics with a set of keys. He went back to school, studying computers at a community college. He was an inspirational figure in the disability community in St. Louis. And he was certainly a hero to one young Saluki fan back in Carbondale.

Friday, November 26, 1982 was a very cold day in St. Louis and Mark Hemphill was studying late at the library. It was the day after Thanksgiving and there weren’t many students around. He went home to his apartment, driving his van into a nearly empty parking lot. They’re not sure exactly what happened next, but the best they can figure out was that after the ramp was partially lowered, he dropped his keys.

And for Mark Hemphill, that’s all it took.

The official cause of death was listed as “exposure,” which was just a way to avoid saying he froze to death. In 1982, there were no cell phones. No one was around on the holiday weekend to hear him and his personal attendant wouldn’t be coming until the next morning. Mark Hemphill died because there was no one with him. His passing made the front page of the St. Louis Post -Dispatch and he was mourned throughout the disability community as a champion.

I’ll never forget the way I felt when I read the news. I was devastated and I just didn’t understand how these things could happen. I was only 15 when he died, but I still think about him a lot. I think about him every time a football player doesn’t get up at the end of a play. And to this day, I still get a sick feeling inside every time I drop my keys.

After I graduated from Miami, I went back to SIU and studied rehabilitation counseling, a discipline that helps people with disabilities become employable and employed. I wrote my master’s thesis about Mark Hemphill’s case and dedicated my doctoral dissertation to #30 of the SIU Salukis. Now I work helping people with disabilities get the technology they need to go to school, to get a job, or to just live independently. To be free.

I never met Mark Hemphill, because I wouldn’t go talk to him under that tree. I hope someday I’ll get to tell him how much he meant to me.

After graduating from Miami University, I went back to my hometown of Carbonale to begin a master’s degree program in rehabilitation counseling at Southern Illinois University. Like rehab counseling students across the country – every year – I began by learning about the foundational laws that brought the field of vocational rehabilitation into being. There are several of these laws but chief among them was the Smith-Fess Act of 1920, the law that established the Civilian Vocational Rehabilitation program. This program was set up to help injured soldiers returning from World War I to learn new skills so they could continue to have productive lives after their military service was done.

Eventually, the Smith-Fess Act of 1920 was replaced by the Vocational Rehabilitation Act of 1973, which established the nationwide state-federal vocational rehabilitation program that we have today. Through this program, millions of Americans with disabilities have been able to receive training leading toward employment careers. Many professionals in the field today – including those from Ohio – may not realize the vital role Ohio played in establishing this incredibly important system.

Simeon Fess, one of the bill’s champions, was from Ohio. He was a graduate of Ohio Northern University and in 1907 became the president of Antioch College in Yellow Springs. In 1912, Mr. Fess ran for Congress, sucessfully, thus beginning a remarkable legislative career in Washington. He would serve 5 terms in the House of Representatives and then 12 years in the United States Senate. Along the way, he pushed through a bill – the Smith – Fess Act of 1920 – that would change the employment landscape for Americans with disabilities for generations to come. 2020 marks the 100th anniversary of passage of the Smith-Fess Act.

Opportunities for Ohioans with Disabilities – Ohio’s state-federal VR program – put out a video hosted by our governor, honoring the life and accomplishments of Simeon Fess. It turns out Governor DeWine and Senator Fess have a lot in common: They are both from Yellow Springs, they both graduated from the Ohio Northern College of Law, and they both went on to serve in Congress and the Senate. In 1998, then-Senator DeWine was given the responsibility of reauthorizing the Vocational Rehabilitation Act, the law that began with Simeon Fess’ vision for a better life for Americans with Disabilities. Senator Fess passed away in 1936 and was laid to rest in Glen Forest Cemetary in Yellow Springs – directly across the street from Mike DeWine’s childhood home.

Please enjoy this short video and be proud of the role Ohio has played in making lives better for Americans with disabilities, through the generations.

Today we unveil the final installment of our interview with Carolyn Knight, director of the Ohio Developmental Disabilities Council. In this segment, she discusses an innovative look at providing transportation solutions for people with disabilities. In all of my different areas of work through the years, access to transportation has always been of paramount importance to people with disabilities. The Ohio DD Council helped start a program to provide more public transportation options to people living in Athens county, a primarily rural county in southeast Ohio. The key to the success of the program, Carolyn explains, is the willingness to reach out in partnership with other agencies and programs that are struggling with the same issue for their constituentcies.

Director Knight also talks about the success of the DD Council Legislative Day, where Ohioans with DD come from all over the state to a political celebration and rally, and then go out and meet with the their state representatives and state senators. It is true that two of the best “abilities” in politics are availability and visibility. To be able to share their concerns – in person – with the powers that be is an important way to help people understand the challenges facing Ohioans with DD every day. The Legislative Day has been a huge success, often featuring visits by the Governor, Lt. Governor and other statewide elected officials. It is an idea Ohio led the way on and has been adopted by many other states across the country.

We thank Carolyn for being generous with her time and for her amazing career helping people with developmental disabilities. You can learn more about the DD Council by going to their website (ddd.ohio.gov). Please enjoy part 3 of our interview with DD Council director Carolyn Knight.

Today we are happy to present part 2 of our interview with Carolyn Knight, Director of the Ohio Developmental Disabilities Council. The Ohio DD Council is a statewide board made up of Ohioans with developmental disabilities (or family members), disability service providers, and professionals from disability state agencies. The Council takes federal money and sends it out in the form of grants to entitities in our state that are working to improve the lives of people with disabilities.

How does that happen? Where do the ideas for these grants come from? Today, Carolyn talks about the process by which Council sets the agenda and turns innovative ideas into grants that go out into the community. She also talks about a particular grant that is opening up new housing opportunities for people with developmental disabilities.

We are grateful to Carolyn for her time and her lifelong commitment to helping Ohioans with disabilities. Please take this opportunity to learn more about this wonderful program that constantly seeks out new and innovative ways to improve the lives of Ohioans with DD.

I have been working in the disability field in Ohio since 1991. I started working as an intern at Goodwill Rehabilitation Center on Edgehill Drive here in Columbus that fall and I have been around ever since. I eventually moved on and worked as a social worker in the mental health field for a community mental health center in Columbus. I also spent several years working as a rehabilitation counselor in the workers’ compensation field, including running my own business for a few of those.

Upon coming to Ohio State, I was fortunate to be appointed by Govenor Bob Taft to serve on the Ohio Developmental Disabilities Council. I spent six wonderful years on the Council. I wound up being the chair of the Employment committee and, in the last two years, the chairman of the Council at large. It was an amazing experience. In all of the experiences I’ve had in my career, none was more valuable than the time I spent on DD Council.

What is DD Council? When I worked in other areas, I could not have answered this question. But it is an amazing group of people (31 in all), made up of people with disabilities (or family members), providers of services to people with disabilities, and professionals from state agencies that touch the lives of people with disabilities. They serve on this Council that is charged with sending out grants into the community to try and establish innovative programs to improve the lives of Ohioans with developmental disabilities.

They are brave. They will try things on a local level no one has tried before, without fear of failure. Througout the years, so many statewide (even nationwide) initiatives that have been implemented to help Americans with developmental disabilities started with a small DD Council grant. They pursue the art of the possible. They are an indispensable part of the disability community, but one that many people may not be aware of.

Today we share the first part of a 3-part interview with Carolyn Knight, director of the Ohio Developmental Disabilities Council. In this first interview, Director Knight talks about what a DD Council is, who is eligible to serve on it, what the mission of the Ohio DD Council is, and what they hope to accomplish with the grants that are established by Council.

Parts 2 will be published on December 17 and Part 3 on December 18. We thank Carolyn for her time and her lifelong commitment to improving the lives of Ohioans with developmental disabilities.