By Mids Meinberg

The United States is a car-centered culture. While increasing work-from-home and delivery options do increase the viability of staying at home, there are still a wide variety of tasks that require a person to leave the home. In most of the country, leaving the home means driving to reach that other location. Many disabled people, including myself, are unable to drive because of our disabilities. This cuts us off from so many aspects of culture and life and forces dependence on others for many vital aspects of survival, like medical visits.

The idea of the “walkable city” has become an increasingly popular discussion in online spaces. Essentially, a walkable city is a way of building communities so that all necessary facilities for employment, survival, and entertainment can be reached within a fifteen-minute walk from any given residence. These sorts of integrated communities are more common in Europe. When I lived in a German village, for instance, I was able to reach anything within that village with a short walk, despite living on its outskirts, ranging from cafes to bakeries to the village center. Perhaps more importantly though, I could easily get to a bus stop.

Making walkable cities would require vast overhauls in zoning regulations and existing infrastructure and is not an especially likely outcome, at least in the short term. More achievable, though, is enhanced public transit networks. Where I live now in the suburbs of New Jersey, an area unusually dense in public-transit options for the suburbs, I am a three-mile walk away from the nearest public node, and that is too far for me to be able to walk — even if the route from my home to that bus stop was safe for pedestrians, which it is not!

Denser public transit nodes might be more expensive for municipalities, but the benefits they offer for all citizens cannot be understated. Cars are extremely expensive and force most people to go into heavy debt to acquire one. If people were able to get to where they need to go without driving, then they would be able to more comfortably manage their finances, even for nondisabled people! It is an especially pressing matter for disabled people, though, as a wide variety of disabilities prevent driving.

For me, a combination of low vision and anxiety make driving impossible. For others, mobility disabilities can prevent the ability to drive. Indeed, the high level of danger involved in driving should make people more interested in public transit options to get from place to place. Any degree of driving skill less than master makes the roads less safe for everyone involved, not just the driver. According to a study by the National Library of Medicine, cars are 4 times as likely to have accidents than buses. Serious injuries were twenty-eight times more likely for car users than bus passengers!

In addition to the safety functions, having more buses means fewer vehicles on the road which reduces traffic for everyone. While there are obviously costs involved in expanding a bus network, the benefits far outweigh these costs. Being able to connect to a broader community allows people to live fuller, more engaging lives, not only through access to services but also access to employment. The vast majority of entry-level work positions in the United States require access to regular transportation, which is a major impediment for disabled people finding work.

I personally have struggled to find work thanks to my inability to drive, my inability to access places that would be willing to hire me. While work-from-home (WFH) jobs experienced a surge during the height of the pandemic, workplaces using WFH have begun to decrease in number since then. In addition, WFH jobs almost universally require access to higher education. Entry-level positions for people without a college degree are almost always in person. While many of these positions might be inaccessible for some disabled people, there are plenty (like basic office jobs) that most disabled people can do, but only if they could get to the office.

Larger cities typically already have some public-transit networks in place, but even these networks could become more broadly accessible. The subways of New York City are infamous for their expansiveness but also their corresponding complexity. Simpler or more abstract subway maps could be helpful in increasing navigability for people who struggle to understand the existing map. In addition, almost every subway station in New York City is not wheelchair accessible, blocking wheelchair users from using them safely or at all. While there are some subway stations with elevators, these elevators frequently break down due to lack of maintenance.

Similar problems exist in other cities with subways or elevated rails. In addition, some buses can be very complicated in using their wheelchair accessible functions, to the point that some bus drivers are not educated in their function. Expanding awareness and demonstrating usage of the ramp and lift functions would go a long way in helping to make sure that wheelchair users are more integrated into our pubic transit networks.

Trolley systems can be a functional alternative to subways or elevated rail, and since they don’t require a change in elevation, they are inherently more accessible. That said, trolley lines do take up space on the road, and thus are less traffic efficient than subways or elevated rails. They are relatively rare as well, with buses tending to fill in for the same role. Trolleys, despite their lack of flexibility, are even safer than buses, are quieter, and pull power from the grid rather than requiring fuel, making them significantly more cost effective in the long run. Urban spaces with larger land area could truly benefit from the inclusion of trolleys into their public transit networks.

When I lived in Germany, I made several trips to the Hague in The Netherlands as part of my social studies curriculum. The freedom to be able to catch a trolley from just down the block from our hotel and ride it all the way to the centers of commerce and entertainment and culture in the city, along with my classmates, and to feel like I was truly immersed in the city despite not being able to drive, is a treasured memory that I will never forget. Walking down the boardwalk with the frigid air coming off of the North Sea, salty in the early evening air, and knowing that the hotel was a short trip away in a warm trolley was something only available because of the amazing public transit options in the city.

Let’s work to make more public transit available for everyone.

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

Editor’s Note: This blog shows the complex systems disabled people have to navigate just to receive the equipment they need to live. Have you experienced something like this? Share in the comments! 

By Mike Ervin

You could say that 2023 was The Year of Receiving New Durable Medical Equipment (DME) for me. I finally took delivery of a lift (a.k.a. Molift Smart) so that now my assistants can transfer me by basically pushing a button. I also finally took delivery of a commode that can be slid across a detachable rail into my adjacent bathtub, where it becomes a shower chair. Now those same assistants can just slide me from toilet to tub and back, no lifting required.

But you also could say that 2022 was The Year of Jumping Through a Lot of Flaming Hoops in Order to Acquire Durable Medical Equipment for me. About 18 months passed between the day I began the process of acquiring my new DME and the day I took possession of it.

I suppose the process would have gone a lot faster if I had enough money to pay for my DME directly. But I just assumed I didn’t. I don’t even know how much my DME cost. I just assumed that it was grossly overpriced, as DME tends to be, and thus far beyond my range of affordability. I tend not to even think about researching DME or other assistive technology that might make my life better for the same reason I never go shopping on the swanky Magnificent Mile here in Chicago. I figure all I’ll be able to afford to do is window shop. Some people find that to be enjoyable. It motivates them to achieve their aspirations. But I find it to be depressing and frustrating. It’s a cold, harsh reminder of how far I am from where I thought I was.

So, I turned to the Illinois Department of Human Services for help. My counselor (fancy name for social worker) said I had to begin the process by getting an evaluation and referral from a therapist. A physical therapist and an occupational therapist came to my home and took a lot of pictures of my bedroom and bathroom. I already knew what kind of DME I wanted so all the therapists did was put together a multi-page report (complete with pictures) detailing why I needed this type of DME and recommending that DHS purchase it for me.

The Molift Smart

A few weeks later I contacted my DHS counselor for an update, and she told me that she now had to put the referral out for bidding. That meant that she had to invite several DME dealers to tell the state how much they would charge to supply me with the DME.

A few weeks after that, my counselor informed me that the bidding process had run into a snafu. Only one dealer responded, and she had to have at least three bids to submit to her higher-ups so that they could select a winner. She said she felt as if she was at an impasse. She didn’t know how to proceed. I finally convinced her to submit the single bid to her higher-ups and explain to them that although only one dealer responded, I still needed the DME. But, she said, before she could do that she had to submit a claim to my insurance because, even though we both knew that the DME wasn’t covered by my insurance, she would need an official rejection from the insurance company stating that this type of DME wasn’t covered to submit to her higher-ups. Otherwise, she said, they would probably kick it back to her and instruct her to submit it to my insurance first.

It took a few more weeks for all that to play out. And then, a few weeks after that, my DHS counselor informed me that we’d hit another snafu. She said her higher-ups instructed her to begin the bidding process anew, this time for a cheaper, lower-end lift that my insurance might cover. I told her to please explain to her higher-up that a lower-end lift would not meet my needs. I told her some of the reasons why. She said she would plead my case to her higher-ups, but I would first have to get a note from my doctor explaining that I needed the type of DME I was trying to get the state to buy and why.

My doctor and I have been through this many times. Whenever I’ve gotten a new wheelchair or a wheelchair repair or some other kind of DME, he’s had to supply a note of medical necessity. He finds this to be very amusing because he doesn’t know squat about wheelchairs or wheelchair repair or any of the stuff that I need, but he figures that I must need it or I wouldn’t be asking him to authorize it. So I give him very explicit instructions stating exactly what I need him to authorize and he crafts a note authorizing it. And the next time I see him I explain to him what he authorized.

Well I finally got the state to pay for my DME. And now I’m just praying that it never breaks; I fear that will set me off on another dizzying odyssey, like when my wheelchair breaks. When that happens, I call one of the two behemoth companies that sell and repair wheelchairs that are still in business in these parts. I usually know what’s wrong with my wheelchair. I just don’t have access to the parts that will fix it or the wherewithal to do the repair. So the repair people at the wheelchair company offer me their first available appointment to have a repair guy come to my home and officially diagnose what’s wrong with my chair, which is usually anywhere from two to six weeks up the road. The repair guy comes over and confirms what I already told them was wrong and then the weeks-long process begins of the wheelchair company sending a claim to my insurance company (along with my doctor’s authorization) and my insurance company deciding whether or not they’ll pay for the repair — and then the wheelchair company ordering parts and when the parts finally arrive the wheelchair company arranging another appointment for the repair guy to come back out to my home and fix my wheelchair.

This is why I always hang on to my old wheelchair after I get a new one and keep it in a closet as a backup. I know that when my new chair breaks, it’ll be out of commission for several weeks.

So here’s hoping that 2024 will be The Year of No DME Breakdowns for me.

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 Andrea Jennings

Inclusivity and accessibility should not solely be a mindset for the holiday season but a mindset and lifestyle that people can carry into their workspaces, family life, and community throughout the year.

The connection between inclusion, accessibility, and the holiday spirit is simple; it is the fusion of holiday cheer and the fundamental values of fostering an inclusive environment.

In my line of work as an accessibility strategist, I encourage embracing each individual’s uniqueness, recognizing that our differences contribute to the rich tapestry of humanity – just as we celebrate diverse traditions during this time,

During the holidays, people worldwide do their best to make others feel welcome, practice generosity, and go above and beyond to ensure their guests and loved ones have enough to eat and are comfortable. When planning dinner parties or events, they check in with their friends to see if they have allergies or preferences. Hospitality should be a year-round practice.

Moreover, the understanding exhibited by employers, acknowledging the additional financial strain during this period and offering holiday bonuses, reflects a commitment to the well-being of their employees.

Let’s look at some proactive ways to help bring the holiday season forward.

Wellness and Accessibility in The Workspace:

• Foster a workplace culture prioritizing employee well-being through wellness days off, adaptive yoga, fitness programs, mental wellness resources, and ergonomic and accessible workspaces.
• Provide and encourage sensory and focus breaks.
• Create a sensory room or quiet space where employees can focus, listen to music, read a book, or simply reduce stress.
• Encourage remote work to provide accessible options.

Create Accessibility and Inclusive Design Job Positions:

• Hire specialists and individuals with lived expertise! Bringing in accessibility and inclusive design experts demonstrates a commitment to creating products, services, and environments that cater to everyone.
• Comprehensive Teams: Forming a dedicated accessibility team, including experts in design, compliance, and user experiences, ensures a holistic approach to accessibility.

Accessible Events, Content, Media and Technology:

Promoting accessibility in media, technology, and entertainment during the holiday season is crucial to ensure inclusivity for everyone. Here are some ways to prioritize accessibility in these areas during the holidays and New Year!

Closed Captions and Subtitles:

• Ensure that television shows, films, and online content include accurate closed captions. It is essential for d/Deaf or hard-of-hearing individuals.

Audio Descriptions:

• Incorporate audio descriptions for blind or low-vision individuals to provide a detailed narration of visual elements, actions, and expressions during holiday-related programs or events.

Accessible Websites and Apps:

• If you have a website or app related to holiday events or services, ensure it adheres to web accessibility standards (such as WCAG).
• Provide alternative text for images and keyboard navigation and ensure compatibility with screen readers.

Virtual Celebrations:

• Consider hosting virtual celebrations or events that allow people to participate from the comfort of their homes.
• Ensure the virtual platform is accessible to disabled individuals, providing features like closed captioning and compatibility with assistive technologies.
• Remember to include brief self-descriptions for an accessible experience for all.

Inclusive Social Media Campaigns:

• Create holiday-related social media content that is accessible to all. Use descriptive image captions, provide alt text for images, and use hashtags that promote inclusivity.

Accessible Decorations:

• If you have physical locations decorated for the holidays, make sure the decorations don’t obstruct pathways so there is an accessible path of travel.

Accessible Events:

• If hosting in-person events, ensure the house or venue and path of travel are barrier-free and accessible for disabled individuals – including parking, ramps, elevators, accessible restrooms, and designated wheelchair-accessible spaces.
• Send notifications to attendees to contact the host or planner regarding access requirements.
• Ensure that printed material is available in alternative formats for blind or low-vision individuals.
• Provide assistive listening devices, real-time captioners, and sign language Interpreters for d/Deaf or hard-of-hearing individuals.

Content Creation:

• Use Camel-Case for hashtags, don’t overuse emojis, and don’t substitute text with an emoji.
• Enable Closed Captions and provide CART (real-time captioning) for reliable captions.
• Provide accessible print media using large print or Braille, numbered and bulleted lists, and agenda or meeting materials in advance when possible.
• Add alt-text to describe images.

Accessible Entertainment Spaces: Performances, Live Events & Award Shows

• Advocate for entertainment spaces such as concert venues, prioritizing accessibility and ensuring venues are accessible.
• Having dedicated employees to assist individuals with access requirements, as well as having all staff trained in best practices in accessible guest services, is the goal.
• Relaxed performances and sensory-friendly performances with dimmed lighting.
• Ensure designated and accessible seating that has an unobstructed view.
• Provide seating for caregivers or personal care attendants.
• Hiring on-set accessibility coordinators for productions and studios highlights a commitment to compliance and proactive measures to create accessible workplaces and services in front of the camera and behind the lens.

Accessible Gift Ideas and Holiday Shopping:

• Explore accessible gift ideas that consider diverse preferences. People appreciate these kinds of thoughtful gestures.
• Online gift certificates for various businesses include books, media, clothing, food, healthcare, and wellness goods.
• Consider purchasing music subscriptions and gifts with accessible, innovative technology such as hand-held motion-controlled music mixers, fitness trackers, headphones, adaptive remotes, or gaming tools.
• Consider adaptive makeup and hair-care tools for individuals experiencing fatigue and chronic pain.
• An excellent website for adaptive gifts year-round is FFlora.
• Support businesses prioritizing accessibility and choosing products and services catering to diverse customers.
• Train all employees on assisting customers with access requirements.

As we revel in the joyous moments of the holidays, my call to action encourages us to carry this spirit of inclusivity into the rest of the year. Doing so enhances the festive season and contributes to a world where respect, understanding, and empathy become year-round traditions.

May the warmth and kindness experienced during these holidays remind us that creating an accessible, inclusive, and psychologically safe environment is a gift we can give one another daily.

Andrea Jennings, M.Mus., is a Disability & Accessibility Strategist, actress, and filmmaker passionate about music, law, and entertainment. Her journey led to creating Shifting Creative Paradigms – Leveling The Playing Field® Multi-Media Production Co., advocating for social justice through Disability culture, film, music, and art. Her work has graced prestigious platforms like Park Avenue Armory, The Metropolitan Museum of Art, and Rutgers University. Her work is also recognized in Forbes, Billboard Magazine, The Atlantic Magazine, The Hollywood Reporter, and The New York Times.

By Dom Evans

I’m not sure of the first time I remember hearing about Easterseals, but I know I was young. I was a child, who had recently been diagnosed with a neuromuscular disability.

It may have actually been before my diagnosis was confirmed. My father had recently been laid off from his job as a tool and die maker. He and my mother were both in school, as he had returned to a community college to get a degree in accounting, hoping for a better job.

It was a very tough time for my family, monetarily speaking. I needed things like orthopedic shoes, leg braces, and various other equipment to help with physical therapy and other things that kept me mobile.

My father, meanwhile, was deaf. Even today, most insurances won’t pay for hearing aids and, without hearing aids, my father was completely unable to hear.

Dom and their father

I don’t exactly know my father’s story, but I think he became deaf in his teenage years or early adulthood. He didn’t really talk about it, and I feel like it was somewhat shameful for him. I do know he was not born deaf, or he could at least hear some when he was a child.

As such, he had no connection with the Deaf community. He could hear a bit (though not well) with hearing aids, but otherwise he would be unable to hear or communicate with anyone. Taking out his hearing aids meant the communication was always one-sided as we could not communicate with him very well or easily.

I know that he got his hearing aids paid for by Easterseals, allowing him to continue to go to school and eventually work. I wish my father was able to learn ASL and also develop a sense of pride in who he was, but unfortunately, he was born in the 1930s, and it was seen as a deficit when he lost his hearing.

I was told when I was young that his hearing loss had a genetic component to it and that I had inherited it, but on a smaller scale. I’ve always struggled with hearing and used to fail all my hearing tests. Even today, people constantly have to repeat themselves and I struggle to hear things, especially when people whisper or speak quietly.

While I never needed hearing aids or anything like that, all of the testing that both my father and I received were paid for by Easterseals. Because of my hearing loss, I had to go for regular hearing testing to make sure my hearing was not getting worse.

I was involved with more than one disability-related organization, and I have to say that Easterseals was a much better experience than the other organizations.

I didn’t have to do any tricks, perform any services or do anything special to get help for what I needed health care-wise from Easterseals. The other organizations wanted more of me. Easterseals just cared that I had a need that needed to be filled and they gave me the resources that my family needed so that we were accommodated and had the equipment we needed.

Just by being serviced by Easterseals, both my father and I were invited to the Easterseals holiday parties for the years when I was getting Easterseals services. They would give us presents, something that I was always grateful for because my family was not rich – so being a kid, I loved that. 

I’m certain I went to a few of their parties and it didn’t feel like pandering or like the organization felt sorry for me or my family. It felt like an organization that genuinely wanted to help. 

When I was getting services from Easterseals in the late 80s/early 90s, it was a very confusing time for me. I had been through a lot of medical tests as they had tried to determine what my disability was. It wasn’t until I was five years old that they really figured it out. My family was really really struggling financially, and Easterseals helped lift the medical burden from my family.

I only stopped getting services from Easterseals after my father got a job with the state as a tax commissioner agent, auditing large companies like Campbell Soup. His state insurance paid for my medical needs.

After I stopped receiving services, my father still got support from Easterseals with all of his needs surrounding his hearing loss. I know for a fact that he would not have been able to get his hearing aids without Easterseals, and that would’ve created barriers that he would not have been able to overcome to be able to work and live independently. That’s the kind of thing that Easterseals gave to him.

My father did not have an understanding about disability pride or even that he could consider himself disabled. There was always a level of uneasiness surrounding his deafness. I believe he also experienced a lot of internalized ableism/audism, but because of the way Easterseals was willing to help us – no strings attached, no promoting us in negative ways, and not owing them any favors – I believe he was better able to accept their help and was very grateful for it. 

Easterseals has always been about helping disabled people. They help by providing accommodations. They help by removing the financial burden that many of us disabled people face. They offer families hope and support. There are a lot of organizations that claim to help disabled people in this way, but they are not doing nearly what Easterseals has been doing for over 100 years.

As I’ve gotten older, I’ve been proud to see that Easterseals continues to want to help move the needle forward when it comes to access and inclusion for disabled people. While a lot of nonprofits say they want to help us, few of them are actually doing so. I’m thankful for all that Easterseals has done for me and my family, and I’m grateful that they keep wanting to help push the needle forward and make the world a little better for all of us.

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.

By Grant Boyer

Countless people have joined the armed forces and taken part in defending the nation and its ideals on land, in the air, and on sea. They have taken part in attacks, flown dangerous missions, and patrolled waters  ̶  however, not as many have had music as their primary mission.

Doug Finke, a trombonist of 23, was drafted in 1965 and remained in service until 1967. He knew from the beginning that he wanted to play music while in the service, and chose to pursue the Marine Corps’ music program. When he finally had the chance to try out following boot camp, he was promptly given a trombone to use and music to play. At the end of the difficult audition, they said, “okay, you’re in.”

“What does that mean?” Doug asked, not yet understanding the scope and sudden nature of what they said.

“You’ve been accepted into the Marine Corps band program, and you’ll be given an assignment,” they replied.

“So, that was cool. It was stressful, but it was cool,” Doug said of his experience.

He joined the 3rd Marine Airwing Band, stationed at El Toro, California. Every base had its own band, and California alone had five or six bands. While in the field band, Doug started writing arrangements for it, mostly show tunes in a military style that used military band instrumentation. His arrangements included “Strike up the Band” and other Gershwin tunes, or simply music that everybody at the time would know.

“A warrant officer was in charge of the band, and gunnery sergeants or master sergeants would do the field directing. I had discussions with them about playing better music, and they said it was more about the precision of marching. I said, ‘I don’t think so. I think that when people hear really good music, they don’t know why but they like it better.’ So they let me write, we did these shows. And to my gratification, the directors of Army, Navy, and Air Force bands came to our director and said, ‘where did you get those arrangements?’” Doug explained.

It should be noted that he had to hand-write all of his music, which required very good handwriting. Doug took pride in his ability to write clear and accurate music, one of the elements of his arrangements’ success.

His handwriting was the reason he was eventually invited to join “The President’s Own” United States Marine Band as the director’s copyist. Within the last three years, Doug found out that he would have been working with Sammy Nestico, a very famous composer and arranger who was directing the “President’s Own” Marine Band at the time. Nestico had previously directed and arranged for the United States Air Force Band, in which he created the famous Airmen of Note jazz ensemble. Nestico is also well known for writing arrangements for the Count Basie Orchestra and is also a trombonist.

Doug ended up turning down the opportunity, “which is another story,” he says. At the time he was invited, he was married and had a child and wanted to be present for his family rather than constantly traveling with the band. On occasion, he’s pondered how his life would have been different but doesn’t regret the choice he made.

Life in general in the Marine Corps was busy and direct, with no moment of the day being wasted.

“At 7 or 7:30 in the morning, we would march in uniform from the barracks to the main flagpole on the base to raise the colors. We would play while marching down the streets, and when we arrived at headquarters, we would play a bugle call to attention and “The Star-Spangled Banner”; and then we would march back, playing marches again.

The rest of the day was made up of two different things — we would either rehearse as a concert or jazz band, or we would go out into the public to play in a parade or play a concert. In ’66 and ’67, we were off base playing in something nearly every day of the year. One year, we went 178 days without any time off. All of that was part of a goodwill campaign to the public, to give them a good feeling about being in the Vietnam war, that it was OK. The idea was to make them feel good about ‘doing what we had to do’,” Doug explained.

Sometimes playing took the band to different parts of the country, such as Salt Lake City to play in a roughly five-mile-long parade, or an annual military-centric show in Seattle. Doug’s arrangements were also played at the Seattle show, which helped them garner attention. The band’s mode of air transport was always a cargo C-130 with no seats of any kind (“typical Marine Corps”, says Doug), requiring the band members to simply find a spot on the floor and get into a good conversation to pass the time.

Back to the Vietnam War, Doug got orders to go to Vietnam twice. Bands went to Vietnam too and, of course, band members would fight as well if necessary. This was obviously worrisome to him given that he had a daughter by this point, but his commanding officer said, “don’t worry about it, I’m getting your orders changed.”

Doug and Grant

“I was principal trombone player for those two years [with the band] and he didn’t want to lose me, so I’m grateful for that.”

When asked what the proudest moment he had in the band was, Doug couldn’t name just one thing, but remembered the excellence of the band’s performance, time and again. “The trombone section was amazing — we were proud, we were loud, and we were in lock step. The formation was always perfect or near perfect. That sort of performance made me proud.”

His time in the Marines and the band taught him discipline in life, helping him to live on a schedule, “and to always do the best job you can. Make commitments, keep commitments, keep your shoes shined, and a crease in your pants.”

Grant received his creative writing degree from the University of Indianapolis in 2021, where he also played the trombone in several bands while attending. Grant has since become increasingly interested in writing the personal stories of friends and family. Grant’s grandfather Doug was a mentor and positive influence through his school years as a trombonist. They have played together in a long list of band performances, sharing the love for the trombone.