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.

By Dom Evans

When I was in high school, I didn’t understand that my guidance counselor should be helping me figure out what colleges I wanted to attend. I believe this was largely because of ableism. My guidance counselor would occasionally see me, but never specifically to talk about my future, probably because he didn’t think I had much of a future.

I also got the feeling that he thought because I handled so much of my life on my own, this was just another area I could figure out myself.

Since the time I was four, I knew I wanted to be an actor. As a teenager, I was heavily involved in theater and acting and had quite a lot of experience and training. I should’ve been looking at schools like NYU, USC, or UCLA. I should’ve been training and preparing for auditions.

Instead, I was floundering — I was stagnant in my approach to contacting schools. I got an offer to apply to Fordham, and I did, getting into their theater program. I was offered a chance to audition but my family believed I couldn’t go to school outside of Ohio if I wanted assistance from Ohio’s Bureau of Vocational Rehabilitation (BVR).

Nobody told me about BVR either. I’m not quite sure how I got connected with them, but they were also supposed to help me figure out my collegiate goals, and they told me I shouldn’t even bother applying outside of Ohio. The only problem was, there were better schools for what I wanted to do outside Ohio and I should have found a way to go to them — scholarships or something else.

In the end, I first went to Bowling Green State University, 30 minutes from my house. I then transferred down to Wright State University, which was a few hours from my house, but much more physically accessible. Both schools had pretty good theatre programs, but because of my ADHD, it was near impossible for me to figure out auditioning, and with WSU in particular, I wasn’t even prepared for auditions when I was finally scheduled to do so. I didn’t practice the way I should have, or invest time in working out what I needed to do for my audition. I believe this is because of executive functioning issues that were never addressed.

So, what ended up happening was that it took me SEVEN years of schooling to get my degree, and I went to three different schools. I spent a little time at the University of Michigan-Flint, also in their theatre program. By the time I transferred back to WSU, I was no longer pursuing theater. I was studying film. My goals had changed because my life had changed and that was partly because of my disability.

I had been injured multiple times and no longer had the capacity to be a working actor, so I decided to go behind the screen. Again, I had to figure everything out alone. My guidance counselor didn’t treat me like my peers because, like everyone else, he just did not know what to do with me because of my disability. Unfortunately, there’s nobody there to hold your hand and walk you through the process when you are disabled in most situations, and because of that I feel a lot of us miss out on a lot of opportunities.

I probably wouldn’t have gone to any of the schools I went to except for University of Michigan, if I had an actual choice. When you require homecare, when you can’t travel without assistance, these things all make it difficult to go to school far away. That being said, disabled people can do it. There were many people at WSU who came from different areas because the school was physically accessible to wheelchair users.

What really needs to happen is that when you are in high school, starting around junior year, you need to figure out what you want to do. Do you want to go to college? Do you want to go to a trade school? Sometimes going to college can help you figure out what you want to do, so if you are not sure what you want to do, go for a year and explore different classes.

If you do have a goal, what are the best schools for what you want to do? Do you have the grades to get into that school? If you do, what requirements for your disability are you going to need to accommodate? Can that school handle those accommodations? These are the first questions you need to ask yourself. There are questions I desperately wish I had asked myself or someone else had asked me. I believe I would have wasted less time in school if I had a better plan.

Once you figure those things out, what is your plan? You should obviously visit the school. Don’t attend a school you haven’t visited, especially if you are disabled. Once I got to WSU and I realized how physically accessible it was, I knew that It was going to be a breeze getting around. That was never a problem and I was able to become independent because I was able to live on my own on campus at WSU.

If you need homecare, that is something you need to figure out. Most states will allow you to still get your homecare if you are going to school somewhere else as long as your family/guardian is still living in the state that is providing the homecare. However, you’ll want to figure out home care issues before heading to college because having to figure it out while you’re going to school is a total headache

After you have visited, you should definitely talk to disability services and make sure they know who you are. Make sure they know what you need them to help you with in terms of accommodation. You may have to give them paperwork and something from your doctor so they can offer you services. It’s good to get that done as soon as possible.

If you have a major that you are going to declare, you also should reach out to the department. They need to become familiar with you and your accommodations. I always met with or emailed teachers if I could before class to let them know who I was and hash out anything I needed from them before classes began.

A lot of planning for college when it comes to being disabled is preparation. I didn’t understand I needed preparation and my education suffered as a result. It took me longer to graduate and figure out how I could accommodate myself.

Reach out to your guidance counselor now to help you with all of this rather than waiting until your senior year when they may not have the means or knowledge to help you figure out your past forward through higher education.

Dom Evans is the founder of FilmDis, a media monitoring organization that studies and reports on disability representation in the media. He is a Hollywood consultant, television aficionado, and future showrunner. His knowledge and interest on disability extends through media, entertainment, healthcare, gaming and nerdy topics, marriage equality, sex and sexuality, parenting, education, and more. He was also featured in Season 1 of Everything You Know About Disability is Wrong, an Easterseals podcast.

By Mids Meinberg

You’ve managed to overcome a wide variety of structural barriers and have successfully enrolled at a university. The course work is manageable, if time consuming, and navigating the campus is more difficult and draining than anticipated. Still, you’re doing as well as you can in facing the wide variety of obstacles that appear in front of you every day. You’re not excelling, but you’re surviving. Then one of your courses, an elective that you were very interested in, springs a new requirement on you: a project that counts for a quarter of your grade, that will require you to leave campus.

Meinberg

For most students, leaving campus is a relatively simple task. Even those that can’t drive or don’t have a car have the tools available to seek assistance from their peers. For disabled students, asking for this kind of help is significantly more difficult, even impossible, depending on the accessibility needs of the specific student. A non-ambulatory wheelchair user requires specifically outfitted vehicles that most college students will not have. Someone with persistent social anxiety or autism may find it difficult to ask for assistance from their peers.

Even in those universities located within cities or within broader metropolitan areas, the campuses are rarely directly connected with the public transit networks of those cities. When I attended Rice University, I had multiple times where I was required to go off campus, but I struggled with each of them, adding to the difficulty of my developing depression and lack of a support network.

For an art history course, I was assigned to a group that set out to do a survey of low-income Houston architecture. The other members of the group were older and more established at the university than me, and ultimately, I did not contribute to the group project despite my best intentions. I simply did not have the social tools to navigate the gap in experience as mediated by my growing social anxiety to ask for the assistance from the group members that would allow me to participate as required.

Also, an acting course at Rice required me to attend multiple off-campus live theater shows. While I managed to attend one toward the end of the semester because acting courses inherently open up routes of conversation and establish bonds, attending only one was insufficient for the course’s requirement. Requiring off-campus show attendance was particularly striking because of the high quantity of on-campus productions. Forcing students to go beyond their capability when there were perfectly valid, if less professional, options available within the expected boundaries was unnecessary and alienating.

In contrast, at Stockton (which I attended later in life), I had only a single mandatory activity that had me leave campus. However, this was a group activity that was scheduled with the aid of the course’s professor, thus creating a structured place to discuss group transportation. Everyone was willing to carpool anyone, so my inability to drive did not leave me on the outs from participating. Stockton’s acting courses also required a student to see two productions, but allowed for on-campus shows thus making it so much easier to meet that requirement.

For many disabled students, especially since the outbreak of COVID-19, even attending university on-campus is impossible. The risks associated provide massive barriers to entry, even in those cases where the campus is technically accessible. In response, many have turned to online programs to provide the safety that they require, allowing them to participate in upper education while still remaining in a fully accessible environment.

Yet, fully online programs become rarer and rarer the higher the degree being pursued. According to an interview with Erin Hawley, there are no fully online PhD programs for her degree. She earned a Master’s degree in English via an online program at East Carolina University, but has failed to find opportunities to attain her doctorate. For other areas of study, like creative writing, it can be difficult or even impossible to find even a BFA program that is fully online.

Instead, the more common structure for the pursuit of online degrees is a limited residency program. A limited residency program is mostly online, but has a fraction of the semester (usually two weeks) take place face-to-face on campus. The benefit of a limited residency program is that they allow students to meet with their professors and peers in person, serving as the basis for the ongoing work that the student will do at home for the rest of the semester. Limited residency programs are of the highest value to students who are also working, allowing for them to take a relatively short time away from their jobs while continuing their education.

“I’ve wanted to pursue my doctorate for over 9 years, but haven’t found a single English program that doesn’t require me to board an airplane – something that’s impossible for me because I can’t fly with my modified wheelchair or transfer and sit in a standard airplane seat,” Erin said. “This inaccessibility shows how ableism often works in tandem. Airplanes and long-distance travel are not accessible, which makes academia not accessible for me. We need change that addresses how systematic inequalities compound to make easy tasks for anyone who isn’t disabled impossible for those who are.”

Obviously, this structure makes for immediate accessibility concerns. A short time on campus will be as difficult for a disabled person as a long time, as the physical and social barriers that exist in the space will be immediately apparent. In addition to the difficulties on campus, transportation to the campus is a major obstacle itself for many disabled people. Planes are rarely accessible for even ambulatory wheelchair users, and are very expensive. Long car rides bring their own issues, especially for disabled people who cannot drive. The transportation issue is exacerbated by the short time spent on campus, as it means these difficult trips will happen in closer proximity to each other. This does not even broach the expenses associated with bringing a caretaker along for two weeks away from home.

Telecommunication technology is more advanced now than ever before in part because of advances made to accommodate for the COVID-19 pandemic. These tools make it so that the benefits of limited residency programs can be met technologically rather than spatially. Fully online programs should be more widespread, no matter the degree, as they provide the greatest accessibility possible.

We have the tools available to allow disabled people to engage in higher education at all levels and in all fields. All that is needed is for society to accept the changes that are needed to bring these programs to the forefront.

Mids Meinberg is a writer and game designer working out of New Jersey. They have an AA in Creative Writing from Brookdale Community College.