How an Adult with Autism Found His Voice with Easterseals

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.

Earlier this month, Easterseals visited Washington D.C. to meet with representatives and share ways to break down barriers for our communities. We also had important conversations about supporting veterans and military families. We owe so much to our veterans and yet, according to our recent study about disabled veterans and employment, only about 1/3 of disabled veterans have enough money to handle their own emergency expenses. What do veterans experience when faced with financial challenges and what can they do to overcome them?

We chatted with Caleb Saxby, who was enlisted in the U.S. Army from 2002-2006, and deployed to Iraq from 2003-2004. Both Caleb and his wife, Amanda, who is also a veteran, are part of Easterseals Greater Houston’s Train your Own Service Dog program and attended Camp Coleman, a family retreat focused on integrating new service dogs into veteran and military families. Additionally, they have been guest speakers for Easterseals Greater Houston’s Youth Action Council.

Caleb and his family

How has Easterseals impacted your life?

My wife and I became connected with Easterseals when we moved to the Houston area a few years ago through the service dog program. At first, I was not sure about the service dog program, but honestly can’t imagine life without my service dog now.

What do you feel is the biggest challenge for military veterans and families when it comes to money management and financial literacy?

I know just from my own experience and from some of my close friends that leaving the military is a hard transition to make, even if it you weren’t injured or anything. Leaving the way that I did, after an injury, you aren’t necessarily super prepared for that change. Many did not plan on leaving and already have families to take care of and college is not always the best option. So, when you factor in not previously planning for it and work options being limited, many times veterans feel like it is an uphill battle immediately and they just can’t catch up.

How can having a disability impact a veteran’s financial options in your experience?

You have to take into consideration that we may or may not be able to physically do the same types of jobs you have training on or have previously done, so a lot of us go in the workforce again at the bottom rung when leaving the military. You also have to think about the missed wages due to multiple doctor appointments and various things that are now a regular thing for many veterans when coming home.

What do you wish more people knew about the process of reintegrating into civilian life and financial stability after service?

Well, if I could speak to the people who are currently in the military, I would advise them to start preparing now because it really does make a difference. If you are like me and many others though who left the military unprepared fully, there are options for help out there for you. There are people to even help with navigating your way through all the different programs you may be qualified for, so check into it and do your homework to find out what is out there.

What advice might you give a fellow veteran or military family members who are feeling overwhelmed about their financial situation?

I would just let them know that there is help available if you need it. Yes, there is red tape a lot of the time, and it can be a headache. It is worth it though for not just the veteran but their entire family. When you do get the help you need, use it for the intended purpose. Use it so you aren’t going paycheck to paycheck and wondering if there is enough in the bank to make it to the next payday.

Through our partnerships and referrals, Easterseals is dedicated to supporting the well-being of veterans in our communities. That’s why we have collaborated with Freddie Mac to share free and accessible money management tools for veterans and military families. Through CreditSmart Military, you can learn about building credit, working through debt and more. If homeownership is a goal, this program can set you up for success.

As Caleb pointed out, it can be overwhelming to navigate the help that is available. Easterseals is available to help shift through the red tape so that you are connected with the right support. Contact an Easterseals near you to learn more about services offered in your area.

By Jeremy Johnson-Miller

“How did you get here today?”

For many, this may never be a second thought, but for others, it is a daily reminder of the extra planning and reliance of others needed to get where they need to go. Many disabled people understand this well – whether it’s figuring out accessible public transit routes (Does this station have a working elevator? Does this bus route get me close to where I need to go?) or wondering if you will encounter ableism on your journey (Will a taxi pass me by when they see I use a wheelchair? Will people question my service animal?).

Even when someone reaches their destination, they may still encounter obstacles in their travel. A crack or broken sidewalk may not hinder someone who is not disabled, but for others it could mean they can’t use that route and must go blocks out of their way or even into the street to bypass the damaged pathways.

Transportation offers independence for people with disabilities, allowing them to get to school, work and social activities, but when one of these connections fails, it can disrupt their entire day or week.

Throughout my career, I met some amazing people who let me learn about life from their perspective.

Jeremy and Aunt Nancy

My passion for transportation started at an early age; my aunt Nancy had poor eyesight that barred her from driving, but that did not stop her from living a full life — she passed that life skill along to me. I would meet her downtown during summer breaks for lunch, picking out a book at the library and, of course, ice cream.

Michelle lives downtown and works several blocks away and uses a motorized wheelchair to traverse the city, but in the winter or during construction season, the path of travel is often blocked or unsafe. Michelle uses the phrase “the sidewalks are my roads” when speaking to city leaders about the importance of sidewalks for her to thrive, and if those fail, she is unable to succeed.

Immanuel lives and works along a bus route, but also values social life beyond work. Immanuel has used a wheelchair his entire life, but because of the limited hours of operation for transportation, he often says, “it’s like I am a 30-year-old with a curfew.” The bus does not operate after 10pm and they cannot go to a late movie or stay out late with friends.

Jeremy and Michelle

These are only a few stories from my 10-plus years working in transportation, but I have a motivation to keep going, nonetheless. People like Michelle and Immanuel, and of course Aunt Nancy, make me want to keep learning and showing up for those who cannot.

Part of my job at Easterseals is sharing ways all of us can make a difference in accessible transportation.

Here are a few actionable items:

• The work we can do starts off with being aware of our surroundings and making sure there is adequate space for everyone to navigate walkways or paths.
• If you notice obstacles blocking a sidewalk, driveway, or building entrance, find the appropriate person to move them.
• If you are a business owner, make sure your signage or furniture is not blocking a path.
• Notice an elevator is out of order? Tell the building staff, even if you don’t need the elevator.
• During snow season, make sure your sidewalks are shoveled.
• Attend town meetings to advocate for safe crosswalks and paths of travel.

Working for an organization like Easterseals has allowed me to put that knowledge into action and continue to create an accessible world for all. Easterseals offers vital resources like customized training and technical expertise on the Americans with Disabilities Act for transportation providers; develops resources to support organizations in their efforts to connect with transportation and mobility services in their community; and identifies organizations in your state, region, or local community that could connect you to the most appropriate transportation services and support the development of coordinated transportation networks.

To make safer, more accessible communities, we must plan transit alongside the disability community. They are the experts on their needs — we can connect with them to advocate and get the attention of government and transit officials. This is and should be a community effort as it benefits all of us to have accessible public transportation options.

To learn more about the Easterseals Transportation Group and what we are doing to create more equitable access to services and settings that everyone should be able to enjoy, visit our website.

Jeremy Johnson-Miller is the Communications Manager for the National Aging and Disability Transportation Center (NADTC) at Easterseals, a federally recognized technical assistance center funded by the Federal Transit Administration, focused on ADA accessibility for older adults and people with disabilities across the country. Jeremy coordinates the release of publications and reports from NADTC, also conducting training and group facilitation for transportation agencies and state DOTs across the country. Prior to joining Easterseals, Jeremy served as Mobility Programs Administrator at Iowa DOT Public Transit Bureau for 6.5 years, providing guidance and oversight of state and federally funded grant programs, also overseeing outreach and collaboration with communities and other state departments within Iowa. Jeremy holds a bachelors in Geography from the University of Iowa and is a Certified Public Manager from Drake University in Des Moines, Iowa.