When to Add a Professional to Your Caregiving Team

by Grant Stoner

Social media is always a contentious topic. Conversations surrounding ownership, misinformation, and relatives who share one too many “Minion” memes are always at the forefront every time platforms are mentioned. Yet, for disabled individuals like me, social media is a powerful tool that lets us interact with the world.

With a physical disability like Spinal Muscular Atrophy type 2, I’ve never been able to leave my comfort areas. My home and surrounding neighborhoods are familiar to me both with their relative distance to my medical equipment, as well as their overall accessibility. If I leave with family or friends to go see a movie, I can know with full confidence that the theater will be accessible. With social media, I can explore new areas, events, and interact with people from across the world, all within the confines of my home. For disabled individuals, social media is simultaneously a gateway and lifeline to the outside world. For me, social media allows me to perform my job as a disability reporter, maintain decade-long friendships, and even stay connected with my long-distance partner.

Social Media and Journalism

As a physically disabled reporter in the games industry, I am consistently covering games released by studios around the world. From California to Japan, I have had the privilege of speaking with developers to explore what makes their titles so accessible. These connections were all made possible through my interactions on platforms like X/Twitter. Every time a developer posts news or announcements, I can use my platform to connect with them and inquire about potential interviews or future updates. And as much as I would like to physically travel to these places, the overall cost, stress, and potential inaccessibility all pose too great of a risk. Thankfully, with social media, traveling is not a requirement.

Aside from having opportunities to highlight new accessible games, my platform on social media lets me directly connect with the individuals who benefit from these advancements. Disabled communities thrive on social media. Regardless of location, preferred system, or disability, social media lets disabled players celebrate accessibility wins, voice their concerns, and more importantly, foster communities. And it’s the perfect tool for someone that actively wants to directly give disabled individuals a microphone. My entire ethos as a disability reporter is to let my sources speak for themselves, rather than let others speak for them. Social media lets me consistently see what needs to be told, opinions that need to be shifted, and who can most effectively tell these stories.

Grant and his partner.

Social Media and Friendships

I grew up playing across varying consoles and systems. And as technology progressed to let players connect from around the world, I found some of the most fulfilling friendships I’ve ever had. My primary friend group, one that is affectionately referred to as ‘The Boys,’ was formed after a chance encounter with one of my best friends in a Call of Duty: World at War Nazi Zombies match. The hour-long game in 2009 soon transformed into regular calls on Xbox 360 party chats. Eventually, the two of us found more people looking to unwind after school and just play some games. Left 4 Dead 2, Borderlands, and especially Call of Duty became staples for us. And as we moved to new systems, the core group remained, even driving from across the country just to meet in person.

With Covid-19, all activities ceased to exist, except interactions on social media and in games. Since my friend group is primarily composed of people 

from across the United States, as well as several local friends, I never felt a sense of separation. Yes, I missed going to theaters and restaurants with people, but I always had access to ‘The Boys’ in some fashion. Whether just talking on Discord or actively playing games with each other, the isolation period of the pandemic was far more manageable because of social media.

Social Media and Relationships

I’ve already stated how social media lets me do my job as a disability reporter, and how it allows me to remain connected with friends despite distance, but it’s equally important with helping me to stay connected with my partner. My partner and I met on X/Twitter in 2021. Both of us are members of the disabled community, and we each have work within the games industry. She is a consultant specializing in cognitive accessibility, and I write articles on the work that consultants do. For years, we would support each other’s work, joke with each other about topics like Pokémon and the disabled experience, and just generally enjoyed each other’s company. In August 2023, we decided to be more than just friends, and it was all possible because of our years of friendship on social media.

Being in a transatlantic long-distance relationship is not easy. There is a five-hour time difference, unstable Internet, and schedules that can occasionally conflict with one another. Yet, our relationship is possible in large part due to our capability to continuously be in touch through multiple social media platforms. There isn’t a single day where we don’t connect in some fashion. Whether it’s sharing screenshots of our New York Times Connections scores, or sending each other music from our favorite artists, we are always speaking to each other in some fashion. And when we finally do reconnect in person after months of distance, there are no awkward moments or feelings of not understanding one another – all because of social media.

Social media certainly has its flaws. It can be used to promote hate, it can censor crucial forms of protest, and cause immense feelings of stress and anxiety with always having an online presence. Yet, it allows people from around the world, regardless of disability, class, race, gender, or sexuality to connect and find their communities. It creates job opportunities, long-lasting friendships, and fulfilling romantic relationships. I may complain about social media, but at the end of the day, I will always support its use and existence. After all, for people like me, it’s a perfect tool to experience the world beyond the four walls of my room.

Grant Stoner is a disabled journalist covering accessibility and the disabled perspective in the gaming industry. When not writing, he is usually screaming about Pokémon or his cat, Goomba, on social media.

Getting food from the farm to the table is not always as accessible as it should be. There are many farmers who need support for their disabilities on the job. The average farmer age is 59 and above, and a lifetime of repetitive, physically demanding labor often leads to work-related injuries and disabilities. In 2021, there were 387 work-related farm injuries in Michigan.

Photo credit to Michigan AgrAbility.

Farmers are vital to our food supply, and AgrAbility ensures the people they serve can access their livelihood with adaptive tools, physical therapies, and connecting them to financial and mental health resources, as well as connecting them to farmers in similar situations to provide support and mentorship. 

The AgrAbility project is part of a competitive U.S. Department of Agriculture and National Institute of Food and Agriculture (USDA-NIFA) grant program where land grant universities partner with disability nonprofits in 22 states to execute the project. In Michigan, that partnership is between Michigan State University Extension and Easterseals MORC. At the national level, AgrAbility was first funded in the 1990 Farm Bill, shortly after the passage of the Americans with Disabilities Act. In 2023, Michigan AgrAbility supported 215 clients. The individuals they served had a wide range of disabilities, including arthritis, back pain, amputations, paralysis, hearing or vision loss, and chronic fatigue.  

Bev Berens, Outreach and Communications Coordinator with Michigan AgrAbility, says: “We help [farmers] by assessing their needs for each situation, and making recommendations for assistive technology [AT] that will help them continue to do their jobs on the farm. Some cases get referred to Michigan Rehabilitation Services for further financial support in getting some AT items that are more costly. Sometimes we are able to provide lesser cost items. Other times, the farmer makes, purchases, or creates what is needed.” 

With many connections to Michigan’s agricultural community, Bev understands how farming and farmers are essential to life, as they grow the food that we eat or the food that we feed livestock. She adds, “It is important to keep farmers able to work because it is usually their life’s work, dream, and passion. Being able to work provides purpose and contributes to the family income.” 

Kevin Klink on his farm. Photo credit to Michigan AgrAbility.

AgrAbility participant Kevin Klink had a major heart attack at the age of 26, which greatly impacted his stamina and ability to keep up with his cattle farm. Reaching out to AgrAbility wasn’t an easy choice for him because he didn’t want to think of himself as having a disability even as he struggled to keep up with the demanding work.  

Ned Stoller, the Agricultural Engineer at Michigan AgrAbility, visited Kevin’s farm and was able to access and offer plans for adaptive technology with the support of Michigan’s Rehabilitation Services, which allowed Kevin to get back to doing his life’s work. This technology included a portable cattle corral, grain bin lid openers, and a mini skid loader for cleaning individual pens and driving through pasture gates. “There is as much an emotional side as a physical side to the equipment that came through this process,” Klink said. “It has eased up things for my family and I don’t have to worry about them or myself falling and getting hurt while we are handling cattle. The OK Corral system is portable, heavy duty, and works great wherever we need to be. I don’t have to worry about a cow crashing over lightweight gates and someone getting hurt.”

Stoller’s technology consults are vital to the success of the Michigan AgrAbility program, and he has worked with other state and regional AgrAbility programs to offer advice, support, and design plans. Bev shares that, while AgrAbility isn’t able to directly provide any assistive technology due to federal restrictions on funding, Ned drafts plans and drawings for different assistive technology solutions and offers them to farmers at no cost. There is also an informal tech bank that families of farmers who have passed donate farming technology back to AgrAbility so they can go to more farmers in need. 

Evan using his all-terrain wheelchair. Photo credit from Easterseals MORC.

Michigan AgrAbility supports the farmer’s entire family as well. Evan, age 12, has Cerebral Palsy and likes to help his parents around their corn and pumpkin farm. Before Michigan AgrAbility, he had difficulty navigating the bumpy terrain and long distances with his walker and standard wheelchair. Ned Stoller connected with the family and recommended an all-terrain power chair that would provide better maneuverability. Michigan AgrAbility was able to provide a scholarship to help pay for the chair, giving Evan the independence he needed to thrive. “I want to be a YouTube steamer for my side job,” Evan said. “But my real job will be a businessman and working with my dad.”   

Another aspect of Michigan AgrAbility is the importance of their work with Spanish-speaking participants, largely carried out by Andrea Garza, a Certified Occupational Therapy Assistant who works with Michigan AgrAbility through Easterseals MORC. “Range of motion assessments and arthritis screenings are conducted with migrant and Spanish-speaking populations on farms. The assessments are done onsite in Spanish, which is particularly important and helps provide a comfortable and safe atmosphere. Andrea shares ways to reduce fatigue and relax muscles and mitigate pain. Each worker who completes a screening is provided with a gift, such as shoe inserts or knee pads, to help alleviate pain from everyday tasks,” Bev says. 

When asked what the most rewarding part of her work is, Bev shares that it’s “helping people continue their work and see and feel the gratitude and joy they have after they have been through the process. It is rewarding to hear how they are using the AT and how it is helping them do their work, reduce frustrations, and improve quality of life.” 

To learn more about AgrAbility, visit the Easterseals MORC website. Thank you to Bev Berens, Ned Stoller, Samantha Wolfe, and Heidi Vanderbeek for their interview and guidance with this blog post.

By Mike Ervin

There was a time when I was adamantly opposed to indulging in any form of “virtual” participation, such as attending a meeting via Zoom.

Virtual participation seemed like an oxymoron to me. At best, I considered it to be a pale substitute for the real thing. My online dictionary says that virtual means “almost or nearly as described, but not completely or according to strict definition.”

I think this deep aversion to all things virtual was at least partially due to my disability. I thought that the disabled activists whom I revered for paving the way for people like me fought hard for my right to fully participate in the world around me. I took that too literally. I felt that doing anything less than showing up in person to take part in everything was to betray them. I always showed up at my polling place and voted in person, rather than voting absentee, for the same reason. I thought it was my obligation to do so.

But then the pandemic hit and everything shut down. Ironically, this also meant that everything opened up more for disabled people, in a way, because practically all participation became virtual. When everything was shut down, about the only way to have any contact with anyone outside of your immediate household was via Zoom and such.

So I gave in. I realized that if I didn’t participate in things virtually I might not participate at all. I might get left in the dust. I’d be even more isolated.

Now that life has reopened a bit, my perspective on virtual participation has changed. I’ve been experiencing a weird phenomenon of late where I meet someone in person for the first time but I’ve seen them many times before on my computer and/or my telephone screen so I feel like I already know them well. And I‘ve come to realize that I probably never would have met any of these great people or had any of the great experiences I had with them had I stuck to being such a purist.

I still do Zoom with some frequency for the sake of convenience and when I do, I don’t feel as if I‘m betraying my disabled ancestors anymore. My perspective now is that they fought so hard for my right to have choices and the power to exercise them, so that I could participate in the world around me in whatever manner suits me best. I think they would consider that sort of connectivity to be a good thing. So what if my online dictionary says that virtual means “almost or nearly as described, but not completely or according to strict definition.” Maybe just by doing our thing in our own way, people with disabilities can redefine what it means to participate. Trying to keep moving forward during the shutdown showed me that it’s the end that matters, not the means of getting there. Disabled people often just do things differently.

Why should I go through all of the hassle of flying to Los Angeles for a business meeting when I can take part just as effectively from home via video conference?

On a cold day, I’m glad that I can work from home and not have to bundle up and commute to and from some office where I’d do the same damn tasks anyway. Just because a person finds it difficult or impossible to go to an office every day doesn’t mean that they can’t or don’t deserve the opportunity to make a valuable contribution. And I now reserve the right to vote absentee every now and then if that’s what I feel like doing. I voted by mail in the 2020 presidential election. I didn’t want to go to my polling place when so many public places were still shut down. But I didn’t want to not vote at all.

I don’t mind talking to my doctor online either. I don’t feel any obligation to show up at my doctor’s office in person if I don’t have to. Wouldn’t it be great if we all could do stuff like give ourselves x-rays and draw our own blood from the comfort of our own homes?

But all of this pertains to taking care of business. I still prefer making face-to-face contact with other humans whenever I can when it comes to trying to have fun. And I still think there is a certain emptiness to some forms of virtual participation. Seeing a video of the Eiffel Tower is not the same as seeing the Eiffel Tower in person. To me, there’s something sad about seeing a guy standing in his living room wearing virtual reality goggles and fighting off imaginary invading aliens from outer space with an imaginary lightsaber. I want to sit that person down, take off their goggles and gently remind them that there are no invading aliens from outer space in their living room and they do not have a lightsaber. I know it’s kind of silly for me to feel the need to hold an intervention like that. What that person does doesn’t hurt me any. To each their own, I guess.

I also fear that too much virtual participation may lead to some serious social regression for disabled folks. We all know that there are plenty of people out there, politicians and otherwise, who would just as soon see laws like the Americans with Disabilities Act get kicked to the curb. Maybe this will give them the excuse that’s needed for that to happen. Maybe they’ll say that since we have virtual access, we don’t need the real thing.

Maybe virtual participation will lead to a slippery slope. Or maybe I’m overthinking this whole thing.

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.