Spouses With Autism Share Both Sides of Their Love Story

Rhonda Clark, 55, has spastic cerebral palsy. “I wasn’t supposed to live past 48 hours. I jokingly tell people I have cerebral palsy, but it doesn’t have me.”

Rhonda started going to Easterseals camp in Wisconsin from 1981 to the early 90s. She grew up in an abusive household, and the two weeks at camp were her reprieve. A week before camp ended, she cried knowing she had to go home. She shares how Easterseals camp allowed her to do exciting things she wouldn’t have otherwise, such as adaptive zip lining and swimming. She even met her first boyfriend at camp. “No one would judge me [there]; everyone was the same,” she said.

Rhonda at Easterseals Camp, 1983

Easterseals camp taught her independence and gave her the confidence to navigate inaccessibility and ableism as an adult. “I’m not one to just settle for what I’ve been told I can have. I’ve never been. And I think going to Easterseals camp as a kid made a huge impact on me in that respect, because that’s where I got my first taste of living independently.”

Rhonda currently lives in Nashville and moved there 28 years ago after graduating from the University of Wisconsin Green Bay in 1995. Her goal after college was to work in country music, and Rhonda was promised a job at a record label. However, fate intervened, and she learned of the label closing right before getting on the plane to Nashville. She had already shipped her belongings to her new home, including her power wheelchair, which she didn’t want to risk getting damaged on the flight. Despite knowing few people in the city, she didn’t want to be stranded in Wisconsin without her power chair, so she went ahead with the move.

“I literally pedaled my resume down music row,” she said. Rhonda was able to land a few gigs, and then spent two and a half years with United Cerebral Palsy in Middle Tennessee, where she helped book talent for their telethons.

Rhonda also volunteered for Easterseals, where she met her dear friend, Beverly Jones. Beverly was in a video for Holly Dunn’s song “I Am Who I am,” which Easterseals played during a telethon. The two met backstage where Rhonda was volunteering and have been a constant in each other’s lives ever since.

After her time at United Cerebral Palsy, Rhonda worked for Country Music Television for seven years, and then at a children’s hospital for 11 years.

Now, Rhonda is starting a non-emergency transportation company in Tennessee, Able and Ready Transportation Incorporated, to address the poor transportation options for disabled individuals – especially wheelchair users like herself.

Rhonda in her accessible van

Paratransit is only available in Davidson County, and Tennessee is a big state – not everyone can live in that service area. She shared that transportation is particularly challenging because of the lack of sidewalks and limited public transit outside of Davidson County. For example, Rhonda would be able to drive her wheelchair to her dog’s vet, which is less than a mile away, but there are no sidewalks to get her there safely; she has to rely on someone else to drive her, which impacts her independence and autonomy.

Her goal with Able and Ready Transportation Incorporated is to offer on-demand, low-cost, 24/7 access to accessible transportation for any reason – not limited to medical transportation. This service could help in a vast number of circumstances, such as when someone’s accessible vehicle breaks down on the road, potentially leaving them stranded, or getting them to work while their car is in the shop. It can unite friends for a night on the town – without a restriction on what time to go home. Able and Ready could also work with hotels or airports to ensure they have accessible shuttle options for wheelchair users. “I just want people to know they can live, work and be who they were created to be. And be with who they want to be with, when they want to be with them,” Rhonda shared.

Rhonda began working on Able and Ready in 2019 and was forced to delay plans because of the pandemic. She is now working with a small team to raise funds and navigate complicated laws around transportation and for-profit businesses. To deploy her services across county lines, which is vital to her mission in reaching all Tennesseans, there is a legal requirement to be a for-profit business.

She started raising money on GoFundMe but found that service was taking too much of a cut. She then moved to fundraising directly on the Able and Ready website. Able and Ready was able to fund one van, but there is still a need for more vans, office space, and staff. These overhead costs would put her in $300,000 in debt, but she is slowly raising that money to get them truly started.

Rhonda’s ultimate goal is to set a precedence in Tennessee and catapult this work to other states.

She proudly states, “somebody said that I set the bar too high, and I said, well, somebody’s got to.”

By Mike Ervin

If you ride public transit trains here in Chicago, at each boarding platform you will see a couple storage boxes made of silver metal. Each of those boxes contains what’s called a gap filler, which is a fiberglass square  with wheels on the side. Gap fillers are painted yellow and on each, planted in blue, is the international symbol of wheelchair access and the words WELCOME ABOARD. The gap filler is about five feet tall and four feet wide.

So, whenever I ride the train, I tell my destination to the Chicago Transit Authority (CTA) customer assistant that’s on duty in the kiosk at the station from where I am departing. The CA, as they are called, then escorts me to the boarding platform. Either that or they meet me there.  The CA has a big ring of keys and uses one of them to unlock the nearest silver storage box. They roll out the gap filler. When the train arrives and the doors open, the CA puts the yellow slab in place in front of the door to bridge the gap between the station platform and the train and I roll in. After the train leaves and the CA returns to their kiosk, they contact the CA on duty at the station of my destination to let them know I am coming so that they can be waiting to put down the gap filler when my train arrives so I can roll off.

When the Americans with Disabilities Act was signed into law in 1990, it mandated wheelchair access to all public transportation. So the CTA was faced with the challenge of convincing people with disabilities to try riding the newly-accessible buses and trains. Thus, the Joint Implementation Committee (JIC) was formed. JIC members were CTA officials and Chicagoans with disabilities. We met regularly to brainstorm ways to make riding the CTA as smooth as possible for wheelchair users. We knew that the key to getting wheelchair users to try riding was to make them feel welcome. We all agreed that not too many wheelchair users were going to jump on the CTA just because the federal government declared that they had a right to do so. Disabled people were too used to being excluded from the public transit system because of all the physical barriers that  kept them out and the reluctance of the CTA to do anything about removing any of those barriers. They needed to be confident that the CTA understood and addressed all of the little details that added up to true accommodation.

Just adding elevators to make train stations and platforms accessible wasn’t enough. When trains pulled up to the platform and their doors opened to let riders in and out, that would create another barrier. The floor of the train would be a few inches higher than  the platform. Most people would  just step over that gap without giving it a thought. But that gap could prohibit a wheelchair user from boarding the trains.

So the JIC recommended that there be something available at every boarding point that can be deployed to bridge the gap. But there would have to be humans involved because these bridges weren’t going to deploy themselves. It made the most sense that assisting people with disabilities in this way would be one of the job duties of the CA. But what if there was no CA on duty or if they were away from the kiosk assisting somebody else and couldn’t be contacted?

In that case, if there was no CA around and a passenger needed the gap filler to get on or off of the train, it would be the job of the person operating the train to get out of the train and deploy it.

That’s how the gap fillers and the system of deploying then came to be long, long ago. There are a lot of moving parts, which makes it more likely that something will go wrong. But all I can say is that I have ridden CTA trains hundreds of times. And whenever I’ve needed the gap filler, a CA or train operator has always deployed it. It’s become a matter of routine for CTA employees. When someone who uses a wheelchair shows up to ride, everybody knows just  what to do.

But one thing that has changed since the ADA became law is that train cars that are much more wheelchair accessible are being manufactured and CTA has put several of them into service. When a train consisting of these cars pulls up and the door opens, the car is usually on the same level as the platform so there’s no need for me to use the gap filler to get on or off.

That’s what happened when I rode a CTA train earlier this summer. As I waited on the platform for the train to arrive, the CA vigilantly stood next to me clutching the yellow gap filler. ready to put it in place. But when the train pulled up and the doors opened, it was one of the newer, more accessible cars. The entrance of the doorway was level with the platform so I really didn’t need to use the gap filler to get on. But before I could say anything, the CA was already putting the gap filler in place. So I just thanked him and rolled on.

When I arrived at my destination, another CA was waiting on the platform with a gap filler. The doors opened and again, before I knew it, she had put it in place.

My return trip went the same way. The train car was one of the new ones so I didn’t need the gap filler to get on or off. But the CAs were always right there to put one in place.

And again, the only thing I said to them was thank you. I didn’t want to say or do anything that might discourage any of them from going the extra mile to make people with disabilities feel welcome riding the CTA.

Mike Ervin is a writer and disability-rights activist living in Chicago. He is a columnist for the Progressive magazine and writes the blog Smart Ass Cripple.

By Ashira Greenberg

Sex education is a sensitive topic that garners a lot of attention in news and media. While sex education is intended to keep people safe and prepare youth for life, many people get uncomfortable with how to approach the topic to support young people, which leads to much discussion about how to approach sex education throughout the country. No national laws govern what sex education should include or how content should be taught across the country.  Additionally, states’ laws and guidelines can often mean that there is no guarantee that education sufficiently covers the topics that people need to learn to stay healthy. According to SIECUS’ state profiles, several states emphasize abstinence-only education for all students, and so many students are left out of conversation entirely in certain spaces — including LGBTQ+ students, BIPOC students and disabled students. While the focus of this blog is disability and accessibility, reflection on the experiences of different communities is important as people do not live single-issue lives.  

People with disabilities are a diverse group with different needs and experiences. According to the United Nations, the disability community is the largest minority in the world, and the community intersects with all other communities. The World Health Organization highlights that people with disabilities can identify with any gender as well as with any sexual orientation and the community spans across all cultures. Regardless of identities or background, people with disabilities can be impacted by a full gamut of sexual experiences, including casual encounters, violence and abuse, and long-term committed relationships.

According to SIECUS’ 2021 Call-to-Action, however, students with disabilities in the United States are less likely to receive sex education than students who do not have disabilities. Among students with disabilities who do receive formal sex education at school, accommodations and representation within lessons can be limited. Only three states specifically include people with disabilities in sex education requirements, and only five states have additional requirements mandating that health curricula be accessible for people with disabilities. While students with disabilities across the United States may have an Individualized Education Program (IEP) or 504 Plan to outline accommodations that must be provided by law to support a given student throughout education, inclusive experiences encompass more than basic accommodations. Legal compliance is key, but a lack of support in classrooms still contributes to risks and harms that impact the disability community. Disability experiences can be more nuanced than legal definitions. Due to a variety of barriers, students with disabilities may have limited access to educational and informational resources, so supportive teachers are key to successful experiences.  

Best practices for accessible and inclusive lessons foster supportive environments for all students with a wide variety of needs. Setting up the learning environment is key to supporting success for all learners. Ensure that the space is accessible, so all people can easily access bathrooms and personal belongings. Be mindful of noises, scents, room temperature, textures, and lighting to support physical comfort. Recognize that students may require accessible furniture, adaptive devices, support people, or service animals to engage in sessions. Setting up the space to accommodate such needs is critical. Setting classroom expectations, like “raise your hand before speaking” and “one speaker at a time,” can help facilitate access by creating a culture of engagement that meets people’s needs. Some expectations may also need to be adjusted to support student needs. Students may need breaks during lessons to allow for movement, snacks, drinks or restroom needs, so plan to be flexible with timing for activities and offer extra time when needed. In addition to a confidential space for questions, tell students how to best communicate concerns with you and ask students for the best way to communicate with them.

Beyond the learning structure, develop a classroom culture with resources that support different learning styles and highlight disability experiences.  Educational frameworks, such as Universal Design for Learning and Differentiated Instruction, can set the groundwork for accessible lessons. Universal Design for Learning encourages teachers to facilitate lessons that allow for multiple means of engagement, representation, action, and expression for students to demonstrate learning in different ways.

Beyond Universal Design for Learning, Differentiated Instruction tailors education to students’ individual learning needs. Be mindful of accessibility of all materials, and consider which textual, audio, visual, and tactile resources will best support learning. Choose educational modalities based on students’ unique needs and offer a variety of different options when possible to maximize the opportunity for engagement with content. When sharing content, clearly define terms to minimize miscommunication and facilitate understanding in areas that may be less familiar or especially sensitive. Emphasize the many potential ways that people can experience fulfilling friendships, relationships, and sexuality. Make sure students know about different ways that abuse can show up in different kinds of relationships. Expand messages about safety and respect to include the needs as well as experiences of students with disabilities who may have some unique concerns. With respect to both consensual and non-consensual interactions, include information on sexually transmitted infections, pregnancy, and contraception. Modify role play or story prompts to incorporate a variety of disabilities in different roles throughout scenarios. Support students with disabilities to navigate situations through self-advocacy and asking for help when needed. If content becomes overwhelming or triggering for some students, allow space for self-care.  People need to support each other to create the healthier spaces that are the goal of sex education.

A note on representation: Inclusive representation that shows and tells the story of disability is important in all aspects of life. In the realm of sexuality and relationships where people with disabilities are typically excluded, representation is even more critical to positive experiences. While books, television shows and movies are starting to openly explore sex for disabled people, many resources may be lacking in authenticity and give a mixed impression of disabled experiences. While disabled experiences can be complex, teachers should be mindful of ways that the media can reinforce tropes about disability in the context of sexuality and relationships. Try to select media that includes authentic representation of disability as well as media that was developed directly by disabled people. Many disabled creators and authors have developed videos, books or other resources that explore disabled sexuality as well as relationships. That said, a representation gap exists in the experience of disabled people in sexual/reproductive healthcare. Healthcare is a key part of actualizing sexuality education  safely, and many educators offer “talk to your trusted adult or your healthcare provider” as the automatic response to questions that feel more nuanced or less familiar, which often includes questions about disability. Unfortunately, access to trusted adults and healthcare providers for support with sexual/reproductive health can be uniquely difficult for people with disabilities. Some healthcare spaces have developed articles and videos for people with disabilities, so keeping resources available can be helpful.

All people need affection, love, acceptance and companionship. Disability does not negate a person’s sexuality, bodily autonomy and the right to positive relationships. While disability is common throughout the world, gaps in education harm the disability community, and a lack of support in the classroom can add to the challenge of accessing safe, healthy and fulfilling sexual experiences. Best practice guidance fosters supportive environments for all students with a wide variety of different kinds of needs. Access is just one step to inclusion for people with different identities, but without access, full inclusion is impossible.  Students with disabilities deserve access to education like students without disabilities, and all students deserve access to respectful relationships.

Ashira Greenberg (she/her/hers) graduated with her Master of Public Health from Columbia University’s Mailman School of Public Health and received her CHES certification. Ashira is passionate about child, youth and family health with an interest in improving educational and healthcare experiences for all young people. Ashira is especially committed to advocacy and health promotion on behalf of youth with disabilities, chronic illness and complex health needs.