In this episode, I will outline the advocacy efforts of my late mother Fran Young, and how I joined her in those efforts. Although I will be bragging about some of my own accomplishments, this really is a tribute to my mom who was such a dedicated advocate and volunteer in a variety of activities. Everything I accomplished in this area was based on her example of hard work and dedication to human services.

Hi, this is Chris Young. Welcome to episode 36 of Contemplating Life.

The tagline of this podcast says that it’s about “Disability, religion, entertainment, politics, and anything else I want to talk about. You know, the easy non-controversial stuff. We briefly dove into politics in the last episode or two so I thought I would continue with that theme.

In this episode, I will outline the advocacy efforts of my late mother Fran Young, and how I joined her in those efforts. Although I will be bragging about some of my own accomplishments, this really is a tribute to my mom who was such a dedicated advocate and volunteer in a variety of activities. Everything I accomplished in this area was based on her example of hard work and dedication to human services.

As I mentioned previously, Mom was always interested in politics. She was a bit of a news junkie. She watched the Today Show every morning, local news, and the NBC nightly news every night as far back as the days of Chet Huntley and David Brinkley. I absorbed that passion by being exposed to it at an early age.

She had what I called a strong sense of volunteerism. When I started at Roberts school she became involved in the PTA. First as a “room mother” which meant that she would host various parties for my class such as an annual thank you party from the PTA to celebrate our annual cookie sale fundraiser, Valentine’s Day parties, Christmas parties, etc.

Eventually, she was elected treasurer of the PTA and then the president.

Through that effort, she got involved in the citywide and statewide PTA organizations. The Indiana State PTA had something called the “Exceptional Child Committee.” It focused not only on special education for disabled kids but also on programs for gifted children such as advanced placement classes. They were active lobbyists at the Indiana General Assembly advocating for funding for education programs for exceptional children.

There she met a remarkable woman named Amy Cook Lurvey who became a lifelong friend. Amy was trained as a speech and language therapist and was the first to hold such a position in Indianapolis Public Schools. She ran for the IPS school board in 1963 but lost to Richard Lugar who would later go on to become Indianapolis Mayor and later US Senator. We talked about Lugar in recent episodes – what an amazing man he was.

While working as a lobbyist for the PTA, Amy, and other such advocates were advised by state Senator Charles E. Bosma that they were not being effective advocates. There were too many organizations competing with one another for scarce resources. He suggested that all the disability advocacy groups form a coalition that would speak with one voice on behalf of disabled people.

Amy Cook Lurvey, Muriel Lee, and other advocates formed an organization called the Council of Volunteers and Organizations for the Handicapped, or COVOH for short. I don’t know for a fact that my mother was on any of the founding documents of this organization, she certainly was involved from its inception and I don’t hesitate to describe her as one of its founders.

It was an organization of organizations. Its members included groups representing muscular dystrophy, cerebral palsy, Associations for Retarded Citizens, deaf and hearing impaired, blind and visually impaired, as well as other groups involved in education such as the PTA.

Through the lobbying efforts of this organization, the Indiana General Assembly passed the Mandatory Special Education Act in 1968. Prior to that legislation, there were only two school corporations in the entire state of Indiana that were serving the needs of disabled children. One of them was Roberts School in Indianapolis where I attended. The other was a special education school in Gary Indiana. Anywhere else in the state, if you were in a wheelchair or had any other disability that could not be accommodated by your local school, you simply didn’t go to school at all. The most you could hope for was that your school district would send you a “homebound teacher.” This was a teacher who would visit you perhaps 2 or 3 times per week giving you one-on-one instruction and a bunch of homework.

The Mandatory Act required that all school districts statewide develop special education programs and begin serving all Hoosier students by 1972. That was the year I graduated high school. Mom often said, “Sometimes you build your bridges behind you so that others may cross.”

You have no idea how tempting it is to read a sentence like that like I was Forest Gump.

”My mama always said sometimes you build your bridges behind you so that others may cross.”

I was fortunate that we lived inside the Indianapolis city limits and the IPS school district. My cousin Nancy, who was born with spina bifida, lived in Lawrence Township northeast of the city. My uncle and aunt sold their home and purchased a new one on the south side of Indianapolis so that Nancy could go to Roberts School five years behind me.

As we have already chronicled in previous episodes, Roberts did a fine job all the way through junior high but their high school program was severely deficient. Nancy lived very close to the Indianapolis/Perry Township border. When she reached high school age, she persuaded IPS to allow her to transfer to Perry Meridian High School.

I was pleased to learn that my mother’s work here in Indiana was paralleled by none other than Hillary Clinton. When Hillary ran for president in 2016 there were lots of features about her history. One of her first jobs as an advocate was for the Arkansas Department of Education. They were unaware that there were so many disabled kids not being served in Arkansas. I don’t recall if they said Arkansas passed its own special education law or if she then took that issue to the federal level which resulted in the passage in 1975 of Public Law 94-142 Known as the “Individuals with Disabilities Education Act” or IDEA. I thought it was cool to learn that my mother and Hilary had worked on the same cause in different states. In 1973 we also saw the passage of the Rehabilitation Act including section 504 which provided huge civil rights benefits for disabled people. Substantial progress in disability rights on the federal level had to wait until the night to guide the passage of the Americans with Disabilities Act.

Passing a piece of legislation, and implementing it fully are two different processes. There was still much work for COVOH to do. The organization, with my mother as the eventual president of the group, continued to be active in the Indiana General Assembly and other areas.

As I grew into adulthood, I began supporting her work in COVOH. One of our major activities was to review the abstract of every piece of legislation introduced in the General Assembly to see if it impacted disabled people. We would then track its progress through the legislature and put out frequent newsletters advising COVOH members to write or call their legislators in favor of or against various bills as we recommended.

We also worked closely with special education administrators. They had an organization led by a wonderful man named Bill Littlejohn. He hired me to post summaries of special ed legislation to an online service through Prodigy.

Mom served on a statewide special education advisory board and although I didn’t participate because I wasn’t on the board, I enjoyed attending those meetings with her as well as countless COVOH general meetings and committee meetings some of which were held in our dining room.

Periodically, the Indiana State Building Commission reviews all of the building codes for the State of Indiana. Mom educated herself in the federal Section 504 accessibility requirements and other accessibility standards. She would attend monthly meetings of the Building Commission and comment on proposed revisions to the building code. While I was in college and later after I had to quit work, I would attend such meetings with her.

The typical agenda of the Building Commission was to do some general housekeeping such as approving minutes from the previous meeting, setting the agenda for future meetings, etc. Then, architects, developers, project managers, or whoever would come before the board seeking a variance from building codes. If you could prove to them that you had a particular project that was unusual and could not be built strictly according to the code but that you could make accommodations that would ensure safety and access then the commission could grant you a variance.

Mom and I would sit at the back of the room patiently waiting through the boring request for variances until we got to the part of the agenda that interested us. Only after their ordinary business of variances was completed would the commission take up the revisions of building codes including accessibility provisions for which we intended to comment.

It seemed invariably, that there was one group always asking for relief from strict adherence to disability accessibility rules. Because the commissioners knew my mother well, they would often turn to her and ask, “Mrs. Young, what do you think of this request?” She became a resource to the commission as their resident expert on accessibility issues. Furthermore, we had made friends with members of the building commission. The State Fire Marshal on the board attended the same Catholic Church we attended during the summer when we stayed at our Lakeside cabin in Brown County. If the meeting ran all day, we would often eat lunch with them.

Anyway, when the plaintiff heard them ask my mother her opinion, you could see the expression on their face saying, “Who the hell is this woman and why are they asking her?” On occasions that I was sitting there in a wheelchair with her, they seemed especially disappointed. They knew they weren’t going to get any breaks with me sitting there staring them down.

On one memorable occasion, architects representing Indianapolis’ Market Square Arena were asking for a variance. I don’t think it was for the initial construction of the facility because my research shows it was completed in 1974 and I didn’t think I was attending those meetings with Mom until years later. Perhaps this was for a renovation. At any rate, there were 2 press areas at MSA. There was one on the sixth level nestled into a couple of rows of the stands. And then there was another press box high above the arena used for hockey games. That press box was not going to be accessible by elevator which would violate accessibility rules.

The architects argued, there aren’t any disabled sports reporters. When they asked Mom what she thought, she asked, “What about Tom Carnegie?” For those of you who are not local to Indianapolis or not a race fan, Carnegie was the sports director at local TV station Channel 6 but is most famous for being the PA announcer at the Indianapolis Motor Speedway until he was well into his 80s. As he aged, he began walking with a cane and would navigate the Speedway in one of those three-wheel electric scooters.

“What if Tom Carnegie wants to branch out from racing and wants to cover hockey,” she asked.

I chimed in, “I’m an aspiring freelance writer. What if I wanted a job as a sports journalist? I wouldn’t be able to cover hockey.”

The architects went back to the drawing board.

My greatest accomplishment as an advocate was that I was instrumental in the passage of a bill that made it easier for disabled people to vote.

Mom and I would go to the Statehouse a couple of days a week during the legislative session to read bills, get copies of them, and occasionally attend hearings. I discovered a bill that would allow physically disabled people to be assisted in the voting booth by a member of their immediate family. The way the law was at the time, blind people could be assisted by family members but if you were physically disabled, you would have to be assisted by the two precinct judges – one Democrat, and one Republican.

Obviously, you want your vote to be private. These precinct workers could be people that you know from your neighborhood, church, or whatever. You don’t want them to know who you voted for. What if you wanted to vote for independent or even communist parties? That’s none of their business.

It wasn’t surprising that there was already a special provision for blind people to be assisted by their families. Prior to the formation of organizations like COVOH, it was common for specific disabilities to be able to advocate for specific benefits that related only to their people. Blind and visually impaired advocates had traditionally been very successful in securing accommodations but they did not extend those accommodations to other disabilities.

The bill wasn’t getting any action. I tracked down one of the sponsors of the bill but he said he was just a cosponsor. He really didn’t have anything to do with it. He just put his name on the bill. I needed to contact the author. So I tracked him down. He said that one of his constituents had written him a letter. She had MS and wanted her husband to help her operate the voting machine. The precinct would not allow it. So, she did what you’re supposed to do. She wrote her legislator. He wrote the bill but didn’t have the time, inclination, or political capital to see it through. He said we needed to get the committee chair to schedule a hearing.

So I tracked down the committee chair, cornered her in a hallway at the Statehouse, and asked, “Why haven’t you scheduled a hearing for this bill?” It had been assigned to some obscure subcommittee on elections that probably didn’t have any other business all session long. But seeing me sitting there in a wheelchair asking for a hearing on a bill that had no price tag necessary and wasn’t going to ruffle any feathers, she had no choice but to tell me she would schedule a hearing.

She did schedule it. A couple of days later I got on the elevator that she was on. She thought I was stalking her but I just needed a ride on the elevator. It was a coincidence. She said, “I got that hearing scheduled.” I had to explain I wasn’t tracking her down.

The hearing was scheduled for 8:30 AM and there was a question at first if was going to be in an accessible hearing room. Some of the rooms in our ancient Statehouse are up or down three or four steps for no good reason. I called out the troops and I was there along with five other people in wheelchairs ready to testify for this bill early in the morning.

One of the representatives asked, does the bill need a provision that you need something like a note from your doctor stating that you can’t operate the machine. One of my buddies Jim Pauly spoke up and said, “I’m tired of having to prove I’m disabled. Can’t you look at me sitting here in a wheelchair and not figure that out for yourself? Are you really concerned this is going to be abused somehow by nondisabled people?

The bill had no price tag attached so there really wasn’t anything to object to. It passed out of committee unanimously and went straight through both houses on unanimous votes. I don’t recall if it was even assigned to a committee in the Senate or if they just rubberstamped it in some committee. There was no need for an additional hearing. Once something innocuous makes it through one house, there is usually no resistance in the Senate.

I later saw the author of the bill and he thanked me for what I did. He was somewhat embarrassed to admit that he had not given it the attention it deserved. He said it’s the kind of thing where you introduce the bill, hope it goes somewhere, and if it doesn’t, you at least write back to your constituent and say, “I tried.” Apparently, he didn’t try very hard. I had to save the day.

I was extremely proud that my only official effort as a lobbyist was so successful.

Eventually, the volunteer efforts of my mother and I shifted from disability advocacy to work at Saint Gabriel Church. At some point, COVOH changed its name to “Council of Volunteers and Organizations for Hoosiers with disabilities” as the word “handicapped” fell out of favor. See Episode 4 for my rant over the loss of the term “handicapped”.

As best I can tell, COVOH no longer exists. It’s not that that there is no need for disability advocacy but without a central focus such as passing the Mandatory Special Education Act, the organization faded away. Mom said that Amy taught her, “The goal of any human service organization is to make itself obsolete. Once you have met all of the needs of your clientele, You no longer need to exist.” So I don’t feel so bad that COVOH is defunct. I feel like it served its purpose. There are other organizations, backed by laws and legal precedents that we didn’t have before that allow us to continue to advocate for our rights.

My mother is no longer with us. Mrs. Lurvey passed away several years ago. I’ve linked her obituary in the description. She was an amazing woman. Also, Muriel Lee, mother of my friend Christopher Lee, who was very active in that area is neuron with us. I learned a lot from their example and no others carry on that fight.

I want to recommend again a book that I recommended in early episodes. Disabled freelance journalist Ben Mattlin’s “Disability Pride: Dispatches from a Post ADA World” provides excellent background on the history of disability rights and the current state of affairs. Links are in the description.

My mother also spent countless hours volunteering for the Marion County Muscular Dystrophy Foundation (MCMDF). She developed a book about caring for special needs kids and updated a publication called “Navigation Unlimited”. It was a guidebook to accessible facilities in Indianapolis. She went to restaurants, shopping centers, government buildings, and other public places surveying their accessibility accommodations, availability of handicap restrooms, and other issues. These days, accessibility is much more ubiquitous than it was and such a guidebook is no longer needed. I’ve heard of some cities developing an app that would serve such a purpose but I don’t think it’s really needed anymore. She served on the Board of Directors of the organization and when her term was up, I replaced her and served two terms on the board.

We were funded mostly by United Way of Central Indiana. It was always a struggle to get funding for our organization because we were compared to the much more famous Muscular Dystrophy Association of America. MDAA was funded by the famous Jerry Lewis Labor Day Telethon. In those days, MDAA raised funds strictly for research. Nothing went to patient services such as assistance with the purchase of wheelchairs, home modification, assistive technology, accessible vans, etc.

MCMDF did fund a small research program but they primarily focused on patient services. The other reason they existed was that really objected to the way that MDAA portrayed “Jerry’s kids” as objects of pity. They would play on your guilt that you had healthy children in order to raise money. It was a successful tactic but it was abhorrent to nearly everyone in the disability community. There were also reports that of all major charitable organizations, a larger portion of their efforts with to administrative costs rather than the actual beneficiaries of the charity.

See the article from Wikipedia which talks about the downfall and demise of the telethon.

Jerry Lewis left the telethon in 2011 and the telethon ceased operations after 2014. There have been online fundraising videos a couple of hours long that tried to re-create the telethon efforts but they have been online only and have not had much success. Jerry Lewis died in 2017 at 91.

MDAA still exists and funds research. Only 30% of their annual budget came from the telethon at its height. They do now also provide some patient services and overall are a better organization than they used to be. MCMDF expanded beyond Marion County and is now known as the Indiana Muscular Dystrophy Family Foundation. They continue to focus primarily on patient services.

I also served two years on the board of another United Way Agency – the Central Indiana Radio Reading Service. This organization used volunteer readers to read newspaper and magazine articles over the radio for people who were described as “print handicapped”. This included the blind, visually impaired, and anyone who was physically unable to handle print media. The reading was broadcast over a sub-carrier frequency of the Butler University radio station and could be received by special radios that were distributed free to anyone who qualified for the service.

I joined the organization when it was founded. I remember the first board meeting. Apparently, at the time, there were 2 organizations that represented the interests of blind people and there seemed to be a rivalry between them. As we went around the table and introduced ourselves, one person said, “I represent people from the… Whatever the organization was.” And another person proudly said they represented the rival organization. You could really feel the tension between the two groups. When it came to my turn, I said, “I believe I was invited to serve on this board for my perspective on people with physical disabilities who qualify as print handicapped because they can’t handle newspapers and magazines. But it will be my intent to attempt to serve the interests of all of our constituents regardless of their affiliation or variety of handicaps.”

I saw some smiles from some of the other board members. Unfortunately, the blind representatives did not see them. I was bringing the COVOH philosophy of “We are all in this together and a rising tide lifts all boats.”

I served my term of two years and then moved on to other activities. As best I can tell, the organization no longer exists and is no longer necessary. With cable news, online news which is available to a variety of disabilities, and the advent of text-to-speech and screen reading software, such as service is no longer necessary.

I’m so very proud of everything that my mother did in her lifetime of advocacy and political activism as well as the countless hours she devoted to her church. And I’m proud to have served with her and tried to carry on some of her legacy.

As I mentioned, our focus shifted from disability advocacy to volunteering for our church. I think next week we will begin a multiparty series about the work I did at Saint Gabriel the Archangel Church. Some of it will be about my continued faith journey that I already chronicled in episodes 6, 7, and 11 through 15 but mostly it will just be my experiences of working as a volunteer there.

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