Ohio DD Awareness Day Ohio Tech Ambassador Panel on FaceBook Live + Upcoming Tech Online Zoom Sessions

All five Ohio Tech Ambassadors, listed below, will be giving a panel presentation at 2021 Developmental Disability Awareness and Advocacy Day on Tuesday, March 2 at 10 AM representing each of their specific regions. This will be streamed live on Facebook Live Streaming at the Developmental Disability Awareness & Advocacy Day Facebook Page at: https://www.facebook.com/OhioDDAwareness

 The Southern Ohio Council of Governments (SOCOG) recently launched the Ohio Tech Ambassador Network, a program promoting how adaptive technology use enhances lives and independence for people with developmental disabilities. Five Tech Ambassadors have been selected statewide to discuss how they use supportive technology at home, at school, at work and in the community. 

Tech Ambassadors will share their personal experiences through virtual peer-to-peer mentoring events scheduled through June 2021. Service providers, family members, mentors and individuals with developmental disabilities will have the opportunity to hear from the Tech Ambassadors firsthand about their own experiences, learn more about adaptive technologies that are available today and ask questions live.

Upcoming events with Zoom registration links:

Here’s information on each Tech Ambassador and the Website:

Central: Marci Straughter <mstraughter@ohiotechambassadors.org 

Southwest: Robert Shuemak <rshuemak@ohiotechambassadors.org

Northwest:   Nathan Turner <nturner@ohiotechambassadors.org 

Southeast: Tanner Huff <thuff@ohiotechambassadors.org 

Northeast: Chris Cooley <ccooley@ohiotechambassadors.org 

Website for more information: www.ohiotechambassadors.org 

Friday Spotlight: Ronnie Milsap

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.

Technology Showcase on March 3 – Email to receive Zoom Link

Technology Showcase on March 3
Marci Straughter, one of the Tech Ambassadors for the State of Ohio, will be having a technology showcase on March 3, 2021 at 10:00 a.m. to show people how technology can be used to enhance safety and independence for people who have developmental disabilities. The showcase will be held on Zoom.
Marci will demonstrate how she uses technology in her home and the community. Marci also serves on the Self-Advocate Advisory Council with the Franklin County Board of Developmental Disabilities. 

If you are interested in more details or would like to receive the Zoom Link to March 3rd, 10 AM event, send an email to Marci at marci@ohiotechambassadors.org 

Pondering the Meaning of Liberty

Pondering the Meaning of Liberty

By Mark E. Seifarth

As of late, my pen and my keyboard have been a bit silent as I sort through the cacophony of opinions & ideas on the recent nation shattering events.

Then, on an early morning news and comment program, Pulitzer Prize–winning historian Jon Meacham gave me a gift, he spoke about a quote from President Ronald Reagan about losing liberty and freedom.

I believe the quote in part reads, “”Freedom is never more than one generation away from extinction.”

As we try to put the historic events of the last months into context and relevance, and how to address the deaths and injuries of Capitol Police Officers defending the U.S. Capitol, let’s ponder for a few brief moment what freedom and liberty have meant to the disability community.

Full disclosure, I look at this through the view of a person with a lifelong disability who personally experienced one and more of these current events.

What it has meant thus far, that we still have much liberty and equality yet to achieve for people with disabilities, and perhaps with importance, what it means to lose our liberty and our country’s liberty.

Let us remember just some examples of over more than 50 years of hard work and sweat that achieved liberty:

  • Individuals with Disabilities Education Act ensuring equal access to free public education and appropriate special education for children with disabilities.
  • Rehabilitation Act (and its many subsequent iterations) not only giving access to job training services and later independent living services & centers for people with disabilities but also very importantly Rehabilitation Act Section 504 banned discrimination on the basis of disability by recipients of federal funds.
  • Americans with Disabilities Act & subsequent ADA Amendments – The White House archives called the ADA “a landmark moment in history.”    “…On July 26, 1990…America became the first country to adopt a comprehensive civil rights declaration for people with disabilities. The ADA was a landmark moment in history, designed to provide universal accessibility in the areas of employment, public service, public accommodations, and telecommunications.”
  • Olmstead Decision – the United States Supreme Court held in Olmstead v. L.C. that unjustified segregation of persons with disabilities constitutes discrimination in violation of title II of the Americans with Disabilities Act.

With those examples of achievements in the disability movement, we must remember that we have yet far to go under the protection of our Democratic Republic that for over 200 years has espoused freedom and liberty for all, not just those with the biggest club. Just a few examples of yet to do:

  • Repeal Section 14 ( c ) of the Fair Labor Standards Act permitting subminimum wage for workers with disabilities.
  • Equal access to Home and Community-Based Services – so people with disabilities have equal access in our society and to their communities where they wish to live with informed choices.
  • Access to affordable high-speed internet and technology across the country in both urban and rural locations.
  • All have access to affordable health care coverage without having to live in poverty.

So, why the brief history lesson of what has been achieved and the short litany of work yet to be done?

Because perhaps John Meacham and President Reagan have shown us a path to the future.

Without our Democratic Republic with its Three Branches of Government (Executive, Legislative, Judiciary) – where one branch does not attempt to take over the others – we would never have had the opportunities to achieve the equal access we have thus far and continue to work for a fairer more inclusive future.

With respect, do not forget governments in this world that disregarded liberty & freedom and how the rights & lives of people were cast away with that liberty.

Our history teaches us that we must preserve the freedom and liberty of persons with disabilities (and all people) in each generation to come.

Remember when other governments decided our rights and lives had no value and acted accordingly.

REGISTER Feb 10-12 – RELEASE ANNUAL DISABILITY STATISTICS COMPENDIUM VIRTUAL CONFERENCE — Free

Virtual Release of the Annual Disability Statistics Compendium Conference continues all week.

Register Now!

https://disabilitycompendium.org/event

https://disabilitycompendium.org/annualreport

https://disabilitycompendium.org/

Date: February 9-12, 2021 | 12:00pm – 1:15pm (ET) each day
Location: Online via Zoom Webcast
Cost: Free
Follow along on social media at: #DisabilityCompendiumEvent

We hope you will join us for our four-part virtual release of the Annual Disability Statistics Compendium on February 9-12, 2021, 12:00-1:15 pm. During this webinar series, experts will present three web-based tools (Compendium, Supplement, and State Report) that make finding and using disability statistics easier for individuals working on legislative and other matters relating to persons with disabilities.

February 9th was recorded and will be available on website soon.

Live captioning and ASL interpretation will be provided during this event.

Speaker List (PDF)

Agenda (View as PDF)

Day 1 (Tuesday, Feb. 9): Release of the Annual Report and Compendium

Moderator: Andrew Houtenville (UNH)


Day 2 (Wednesday, Feb. 10): Federal Data Collection and Adjusting to COVID Environment

Moderator: Kirstin Painter (NIDILRR)

  • Rapid Changes to U.S. Census Bureau Household Surveys: Data Collection During COVID-19
    Jason Fields (Census Bureau)
  • Health Data
    Julie Weeks (CDC/NCHS)
  • The Occupational Requirements Survey
    Michelle Dressner (BLS)
  • Disability Employment Data and Trends During COVID-19
    Chris McLaren (ODEP)
  • Questions & Answers

Day 3 (Thursday, Feb. 11): Impact of COVID-19 for People with Disabilities

Moderator: Amanda Reichard (NIDILRR)

  • Intersection of Race, Disability, and COVID-19: A Machine Learning Approach
    Allison Kolbe (ASPE)
  • Use of Telehealth
    Kimberly Phillips (UNH)
  • Employment Trends and State Patterns
    Andrew Houtenville & Shreya Paul (UNH)
  • Food Sufficiency
    Debra Brucker (UNH)
  • Questions & Answers

Day 4 (Friday, Feb. 12): Disability and African Americans

Moderator: Shelly Reeves (NIDILRR)

  • Infographic: Social Inequities Experienced by African Americans
    Kimberly Phillips & Marisa Rafal (UNH) 
  • COVID-19 Agenda among African Americans with Disabilities: A Social Determinants of Health Perspective
    Edward Manyibe & Andre Washington (RRTC on Research and Capacity Building for Minority Entities, Langston University)
  • Questions & Answers
  • Closing Commentary
    David Wittenburg & David Mann (Mathematica)
  • Quick Closing Remarks
    Andrew Houtenville (UNH)

(Agenda is subject to change)

Hollywood Committing to Include More Actors with Disabilities

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.

Ohio Lays Out Plan to Get Covid Vaccine to People with Disabilities

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.

A Time for Work

Mark E. Seifarth 

Every two years we elect U.S. House Members and one-third of the U.S. Senate. Every two years we elect legislators in our states all across this country.

Every four years we elect and inaugurate the President of our United States. Today is that day.

Here’s a Presidential Inaugural Day thought or two by way of comparison.

In many ways our great and diverse country is not unlike the great and diverse disability community. We are all different and yet we all work toward common goals as well.

One of the first things I learned when I began working on disability policy and public policy almost 40 years ago is the only disability I can speak about is my own. I can talk about being a person with Cerebral Palsy. We all work together so all persons with disabilities can speak for themselves and we can move forward for full inclusion in employment, our communities and our lives as equals with all our fellow Americans.

But, perhaps there are other questions to contemplate today.

Part of the reason that we as a varied United States and a varied disability community come together is because we all have work to be done. Employment work; Access work; Community work; Reasonable Accommodation work; Equality & Equity work;

So is not Inauguration Day a time to ponder the work? The work as a country we have done and the work yet to be accomplished.

The question for our elected officials, our disability community, our advocates, our neighbors, our friends is can you do the work? Will you do the work?

I think we all want to work toward goals to improve ourselves, our communities, our country. That takes effort, commitment, and yes, work.

One can ask the question and perhaps should ask the question periodically, have our elected officials done the work? Have we done the work?

Have we increased access to health care for those with no or limited access?

Have we improved Medicaid so that people can stay healthy and out of unnecessary and expensive hospital stays?

Have we examined Medicare so that our seniors and others so we can stay healthy and continue to contribute in our communities?

Have our states and our federal government worked together and not just tried to foist the responsibility on each other without resulting in a better use of scare resources?

I could go on and on…

And I realize we are in a time of a once in a century pandemic that has taken up much of the available resources. But again, have our federal, state, and local governments worked together during a time of unprecedented need?

I raise all this on Inauguration day to look to our history and look to our future.

Our great country has worked together through depression/recession, world wars, unrest, and now a pandemic. The disability community has worked together through the Rehabilitation Act, Individuals with Disabilities Education Act, Americans with Disabilities Act (ADA), ADA Amendments, and so many others so we have equal access, equity, and equality.

I submit for your consideration: Have we done the work in the past four years? Have we tried to do the work in the past four years?

With that examination, I will conclude with the much more difficult questions.

Can we move forward together? With all our grand diversity, and our chosen spiritual guidance, are we prepared to support each other as we agree and disagree? Are we ready for the work ahead? 

What is each of us ready to do to empower ourselves, educate our elected officials, and do the work?

 

New Samsung TV models to be more accessible for people with hearing or visual disabilities

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.

Remembering a Man I Never Met: Mark Hemphill

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.

Former SIU Saluki football player Mark Hemphill
Former SIU Saluki Football Player Mark Hemphill

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.