You Might Find Something Accessible to Be Thankful for Within this List

A picture of Alicia smiling, sitting on a couchThis is my favorite time of year. I love reflecting on the year and recognizing what I’m thankful for. And then, once Thanksgiving is over, the days start leading up to New Year’s Eve, which symbolizes the closing of a chapter and the beginning of a new one. For me, a new year feels like a clean slate and a fresh start, an opportunity to look at it from a brand-new lens.

I started 2022 feeling cautiously optimistic. I wrote a post like this before last year, focusing on the pandemic. It was very therapeutic to write it all down — to think to myself, “Okay, it was a rough year, but I’m going to sit here and I’m going to find those silver linings.”

This year feels like a breath of fresh air compared to the last two. It wasn’t perfect — no year ever is — but sitting down and finding its silver linings, expressing what I’m thankful for, comes much, much easier in 2022. So here is my reflection in all its glory!

  1. I’m thankful for my friendships. I wrote a post about this recently but truly, I can’t stress this enough. The first thing that comes to mind when I think of this year are my friends, especially the virtual ones. My friends are spread far and wide, and this year I strengthened so many connections and found routines in the day-to-day that really helped with my mental health. I had monthly movie nights with friends. I had virtual coffee dates on Saturday mornings. I had SharePlay sessions with a friend every time an album came out by an artist that we were both crazy for. These small, seemingly insignificant moments got me through some really hard times, simply because they were things that I was able to look forward to.
  2. I’ve grown much more confident in my travel abilities. It’s been six months since my MetroLift experience to the airport and sometimes I still catch myself thinking about it. A year ago, there’s no way I would’ve felt confident enough to try that. I am an anxious traveler, and a year ago, I would’ve let that anxiety get the better of me and insist that we come up with a travel plan that does not involve relying on para-transit, maybe asking a friend to drive me instead. But now? I trusted that Juan knew the system, and I trusted myself that I was independent enough and courageous enough to try something new. And so I did it, and it went well, and I felt liberated enough to write about it.
  3. I stayed in Houston for a month and it was a success! Juan and I have been in a long-distance relationship for so long that we knew that one of us would eventually need to relocate. I’d already fallen in love with the Houston area, but I wanted to make sure he and I could live under the same roof before making the big decision. During that month-long visit we had a lot of open and honest conversations about our relationship, cohabitation, and our expectations. And I did a lot of networking, too. I checked out the transportation system, the way strangers treated me as a person with a disability, and other things like that gave me a glimpse of what my life in Houston might be like. And I loved that life.
  4. I’ve grown grateful to people who take the time to provide equal opportunities for blind and visually-impaired individuals, such as the creators of audiovault.net. This site provides free TV shows and movies guaranteed to be audio described. I prefer this over going to movie theaters — I’ve had far too many bad experiences at movie theaters (sometimes giving us the wrong audio description device, other times giving us a device that didn’t work and needed to be fixed). I’ve watched so, so many more movies this past year knowing I can count on audiovault to provide us with access to accessible content.
  5. I’m thankful for my family’s efforts to include me. Example: during season 41 of the TV show Survivor, CBS started providing audio description. That means that every week now when I watch survivor with my parents, my mom turns on the audio description. That way, she no longer has to describe and can focus a bit more on the show, and I know precisely what’s going on in the show without needing extra help from family members.
  6. Thanks in large part to the YouTube channel “Yoga with Adriene,” I now do yoga every day. I occasionally turn to Sara Beth Yoga. Both of these channels do a great job at describing yoga poses and, if you aren’t familiar with the practice, have beginner videos as well. Therapists have recommended yoga to me for anxiety, and ever since I started doing yoga every day with my mom, it has become part of my day and has done wonders for my mental health.
  7. Lastly, I discovered a good (and very accessible) journaling app called Day One. I wanted to get back into journaling. This app allows me to journal whenever and wherever I am, and I love how it feels to take time to write down my feelings.

Gratitude is something I constantly work on. On bad days, I could always have the mindset that the entire day was awful, and “at least there’s tomorrow.” I’m learning now that there’s always something to be thankful for, even if it takes some time. I think that’s something we should all strive for.

I hope you all have a happy Thanksgiving, enjoy the rest of 2022, and have a hopeful, positive opening to 2023. Happy holidays!

 

It’s Not Political, It’s Access: The Disability Community Supports Easier Voting Access

I Voted Today stickerWhile selfishly I’ve always thought people with disabilities – the community of which I identify – were more “thoughtful,” specifically in our opinion of access, now I can proclaim our thoughtfulness as fact!

As a Project Manager for Change for Balance, a boutique strategic communications company, and as a self-proclaimed “connector,” I brought together our client, Easterseals, with my friends at AARP with the idea of commissioning a voter survey among our two shared constituencies – people with disabilities and older Americans aged 50+.

And guess what? We did it! You can check out the full results of the Easterseals and AARP survey here.

But, if you’ll allow me to get straight to the results this “connector” found interesting, stick with me.

With strong bipartisan support – I just knew this would be true – people with disabilities aged 50+ support expanding voting access, including voting by mail, voting absentee, and ballot drop boxes.

While much of the media pits the major parties at odds on many issues, fundamental access to voting is a united issue for people with disabilities 50 and older. For a very diverse and intersectional population, that’s nice. Simply put, it’s not political – it’s all about access!

Tony Coelho, the esteemed former United States Congressman and primary sponsor of the Americans with Disabilities Act, puts it perfectly “Voting access is not politically motivated as it is supported by Democrats and Republicans alike. In that regard it’s like passing of the Americans with Disabilities Act.”

Another interesting result – and this applies mostly to in-person voting – is when given a list of multiple accommodation options, 43% of respondents say they utilize an accommodation when voting.

I’m not good with math, but 43% of what is expected to be 30 million people with disabilities 50+ voting in the midterm election is a lot!  Those who require just a little extra help will cast their ballot.

While this survey reveals many other important issues to the disability and older American groups, including inflation and other pocketbook issues, a resounding number of people just want access.

Unfortunately, as discovered in previous conversations with my friends at Rutgers University, it’s likely there are a number of people with disabilities who don’t participate in the elections because of accessibility barriers. “If people with disabilities voted at the same rate as everyone else, there would be 1.75 million more voters,” said Lisa Schur, professor, and co-director of the Rutgers Program for Disability Research.

We know it, Rutgers reinforces it – at the end of the day, the disability community wants greater access, from restaurants to airlines to casting our ballots. And, when we have it, we damn sure will participate!

 

Two Members of Congress are Putting a Spotlight on Accessibility

An official portrait of Senator Tammy DuckworthHere’s why it’s cool to have a Senator who uses a wheelchair to get around: she’s an accessibility expert! Tammy Duckworth, our Senator here in Illinois, served in Iraq and lost both legs when a rocket-propelled grenade struck the helicopter she was co-piloting in 2004. After she won the 2017 election for Senator of the State of Illinois, an article in the Chicago Tribune pointed out that running a Senate campaign involves lots of travel and complicated logistics. From the article:

Duckworth said she and her staff have a pre-event checklist to make sure the site is up to their standards — and that means making sure even the bathrooms are wheelchair accessible.

“I don’t go to any place that isn’t accessible even though I have artificial legs that I can walk in; it’s on principle,” she said. “If someone in a wheelchair can’t get in it, I’m not going to do an event there because just because I can get in there doesn’t mean somebody else can.”

The article said that during her campaign Duckworth often heard from voters who question her ability to serve. A question about using a wheelchair in public during the campaign came up when she first ran for Congress. “I’m not ashamed I’m in a wheelchair. I earned this wheelchair,” she said. “I’ve always insisted it’s not something that we hide.”

A seasoned member of Congress now, Senator Duckworth joined Representative Sarbanes of Maryland last month to introduce the Websites and Software Applications Accessibility Act (S. 4998 , H.R. 9021)) in both houses of Congress. The bill will require employers, state and local governments, and private businesses to make their websites and applications accessible.

Much has been made about how people with disabilities benefitted from digital access during the COVID pandemic, but casual conversations I’ve had with people with visual impairments tell me how frustrated they’ve been with technology, the high number of web sites that are not easy to use if relying on speech software and the hours they’ve wasted trying to make it work.

I am blind, and my husband Mike is sighted. During the pandemic Mike has had to take over much of the on-line ordering we do, the forms we are asked to fill out on line, and the online streaming we do. I get a lot of messages in my in box about plays and concerts and lectures that are available on line free of charge, but when I give that a try, the links and buttons are not accessible – frustrating!

If passed, this new legislation will make it clear that the Americans with Disabilities Act applies to websites and applications. I already know that my Senator will be voting in favor of the bill — she’s the one who introduced it to the Senate! Now it’s time for me to take action and find out who my House member is and contact them. You can do the same by linking to the official U.S. House of Representatives web site.

 

What I’ve Learned from Working Alongside My Colleagues with Disabilities

This blog was also published by the U.S. Chamber of Commerce.

Written by Roddy Tabatabai.

As co-founder and partner at Change for Balance, a full-service strategic communications and production agency on a life-long journey to change this world for the better, it has always been my goal to foster a diverse and inclusive work environment.

My passion for building equity and allyship across our communities is a personal one. While non-disabled, I am an ally and advocate, and I am a person of color as my parents emigrated from Iran years ago. I understand the extreme value of what an underrepresented perspective can bring to the table and how critical it is to create workplaces where everyone feels a sense of belonging. Plus, in my work as a filmmaker, I’ve been privileged to travel the world to showcase stories that capture people’s hearts and minds – from climate action to animal welfare, human rights and yes, disability inclusion.

When building our workgroup at Change for Balance, we asked ourselves, what community is not properly represented in the workforce? Who is not getting a seat at the table? Who’s missing? After learning that the largest minority group in the United States are the 61+ million Americans living with disabilities, I was shocked to learn that the employment rate for people with disabilities was so extremely low. Thus, our company took on its next mission – HIRE MORE PEOPLE WITH DISABILITIES! And we did!

Straight out of the gate, the first thing I learned working alongside my colleagues with disabilities is that they are extremely talented problem-solvers with valuable perspectives. People with disabilities are constantly seeking out ways to perform tasks which others take for granted, and that outside-the-box style of thinking is essential to growing, improving performance, and elevating our work — companywide!

It is a privilege to work alongside my colleagues with disabilities. The work ethic that comes from the disabled community is unmatched. In addition to enhancing our work at Change for Balance, hiring people with disabilities at our company has also brought my own personal work ethic to new heights as the disabled community encourages me to often think differently, opening my eyes to an entirely different perspective I hadn’t previously encountered.

The pool of talented professionals with disabilities doesn’t stop at Change for Balance – they are everywhere and in all professions. In fact, CFB recently worked with a cast and crew of 70% people with disabilities to produce a nationwide PSA series for Easterseals. We even hired a stylist with a disability!

We realize disability inclusion doesn’t stop at our doors; we can collaborate, hire, and contract with talented professionals with disabilities from across the United States and beyond. The practice of including people in front of and behind the camera will be a priority of CFB now, and in the future, whether we are working on Easterseals content or elsewhere!

My advice to any business or work group looking to take their company to new heights:  hire more people with disabilities! They will get the job done.

 

Working for Companies Who Prioritize Disability Inclusion Has Made All the Difference in My Career

Ben Trockmen smiling in front of an office buildingThis blog was also published by the U.S. Chamber of Commerce.

Having an employer that believes in you – the whole you – is incredibly important for success.

When I suffered a spinal cord injury 15 years ago, I had a tremendous lack of confidence, a trait I know I share with many people with and without disabilities. I didn’t know it at the time, but after graduating college a few years after sustaining my disability, ready to enter the work world for the first time, I needed an additional support system. I needed someone to believe in me at the same time I was trying to believe in myself. What I didn’t know is that support system would be my employer.

In my “short” professional career of nine years, I’ve worked for two tremendous companies who have prioritized disability inclusion, and, in my opinion, it’s made a world of difference – not only just for me, but for all employees. When companies like Change for Balance prioritize inclusion and culture, the “trickle-down effect” is real. Everyone feels included, and deeper and more understanding friendships are formed.

Our partners at Change for Balance may not take all the credit for this, but by being inclusion-minded in our recruitment approach, the composition of our team, and even being thoughtful and strategic to ensure accessibility as we plan meetings and travels, our company is more compassionate, allowing each of us to become the most confident and strongest versions of ourselves.

As an employee, if you are “hitching your wagon” to an employer, I suggest other potential employees seek out a company like Change for Balance, a company who cares about culture and inclusion. No doubt you’ll have a more thoughtful company, but an even more successful career.

The same can be true of many of our clients who have prioritized hiring people with disabilities as part of their DEI&A practices.  Among them is Easterseals where Erin Hawley, a talented and accomplished influencer in the disability community, is on the national marketing team as its organization’s Communications and Digital Content Producer.  She brings an important and authentic perspective to initiatives on which Easterseals is focused in their mission to advance full equity, inclusion, and access to people with disabilities.

 

Here’s What You Don’t Know About Unemployment

Crystal Odom-McKinney was named one of Chicago Defender’s Women of Excellence Honorees.

It’s hard not to notice the media’s attention on COVID-19 and its impact on employment. Since 9.6 million people lost their jobs in the U.S., it makes sense. However, very little spotlight is put on the 5.7 million workers ages 55 and up that lost their jobs during March and April of 2020 alone. Currently, older workers are 17 percent more likely to become unemployed than their slightly younger peers (AARP). Perhaps there is a sentiment that this issue only concerns matters of retirement. Some may believe that people entering retirement just need to be a little scrappier with their finances, but in the end, they’ll be okay. Crystal Odom-McKinney knows there’s more at stake than that.

Crystal Odom-McKinney is the National Director of the Senior Community Service Employment Program (SCSEP) at Easterseals. SCSEP is the largest federally funded program for older job seekers. After over 20 years managing nonprofit programs and working with underserved populations, Odom-McKinney has a deep understanding about how complex an issue like unemployment can be for communities that often don’t get as much attention. For her work, Odom-McKinney was recently honored at 15th Annual Chicago Defender Women of Excellence Awards, which celebrates local African American women who inspire others through their vision and leadership. During National Employ Older Workers Week, we thought it would be a great time ask a few questions about what this award means to her and why she is so passionate about the work that she does.

What does being recognized as a Chicago Defender Women of Excellence Honoree mean to you?

It is such an honor to be recognized for what I do both inside and outside of work.  I give all gratitude to my family, friends, and community, because this is what drives my purpose.  One of my favorite quotes by Mahatma Gandhi is “You may never know what results come of your actions, but if you do nothing, there will be no results.”

Why is it important that we recognize National Employ Older Workers Week?

Mature job seekers remain a vital part of the workforce. First, we are living longer healthier lives. We have more options now and retirement is just one. Many return to work to pursue different types of disciplines. That said, mature adults also bring unique value to companies and organizations with attributes such as reliability, dependability and a unique perspective due to life experiences. Employers need to be educated on the myths and truths about hiring workers.  For example, retraining or retaining mature workers may be more cost-effective than hiring and onboarding their younger counterparts.

Why are Senior Community Service Employment Program (SCSEP) services important to meet the needs of communities today?

I have many stories from the field where I’ve been told, “this program changed my life.”  But there is one powerful story about a job seeker who said this program saved her life. This particular SCSEP participant overcame obstacles like homelessness, unemployment, learning challenges with technology, ending an abusive toxic relationship, and seeking out support for her mental wellness.  On many occasions, she felt hopeless and that no one cared.  Since enrolling in the SCSEP program, opportunities opened in every way: she now has a home and steady income. She’s learning new skills, is comfortable using a computer, and has support on her mental wellness journey from years of being unheard.

And this is what it is all about. SCSEP is about bringing hope back to those who felt like every door was shut on them. It’s about providing opportunities and options for those who need that added support. It’s about bringing harmony to communities across the country through training opportunities at local organizations.  We’re sharing these stories with lawmakers in D.C. to have elected officials reach out to local businesses and encourage the employment of these job seekers. This is the magic of the SCSEP program and why it is so important!

 

Accessible Airlines: Maybe Never Felt So Good

an airplane taking off on a runwayThis post is a reaction to a Disability Scoop article about wheelchair accessibility and air travel. 

While a headline of “maybe” might not sound super exciting – it’s far better than a “no.”

Person by person, conversation by conversation, email by email – accessible airlines are coming.

10 years ago, after crafting a blog post with the passion and plan to make airlines more accessible for wheelchair users, and wielding a petition with thousands of signatures, my family and I took the 726-mile drive to Washington DC to meet with elected officials and the Department of Transportation (DOT).

With a wickedly connected Legislative Affairs Assistant from Easterseals – an organization I’ve become deeply acquainted with after serving as a Easterseals National Representative in 2012 – we had high hopes for our meetings. I was out to change the world of airline travel for thousands.

While I had a life-changing experience traversing the Capital, navigating our countries most historic office buildings, making my way up and down 110-year-old elevators, waiting anxiously outside those elected officials’ offices, and – the highlight of a lifetime – meeting the architect of the Americans with Disabilities Act, Tom Harkin – to say I left “the Hill” disappointed was an understatement.

I don’t get worked up often, but I distinctly recall having to hold back harsh words of frustration, while an official at the DOT – on speakerphone, mind you – told me all the reasons why a wheelchair on an airplane wouldn’t work. Money. Regulations. Excuses. All while her colleagues in the room looked at me with despair, realizing my sharply rising blood pressure after traveling halfway across the country for this meeting.

In 2012, it was clear to me that accessible airlines weren’t a priority. I got a “no.”

Luckily, there are fellow fighters and advocates out there. My friend, Michele Erwin, and crew at All Wheels Up (AWU) – the only organization in the world crash testing wheelchairs for commercial flights – and a boatload of advocates, who share the same passions I had while staring those DOT officials in the eyes – have accessible airlines a top priority and have pounded the pavement since I was in DC.

There has been a lot of progress. Wheelchair crash testing. More and more meetings with elected officials and airline representatives. There have been studies commissioned at multiple universities – and, with each of these examples – I’m just speaking about the work done by All Wheels Up!

Yes, I buried the lead with this story, but after 10 years of work, and now under the leadership of a fellow Hoosier at the Department of Transportation, and years of advocacy efforts – we are making progress! A hard “no” is now a “maybe,” and while it could be a few years for implementation, the very fact that Secretary Buttigieg is making statements using the terms “wheelchair users on airplanes” makes me teary-eyed with excitement.

While I certainly wasn’t the first to bring up the concept of a wheelchair spot on the airlines, and I only carried the torch for short amount of time, it is nonetheless exhilarating to read a “maybe” in the headlines.

“Maybe” someday I’ll fly to DC to advocate for another worthy cause. Maybe someday I’ll fly to LA to meet with my coworkers. Maybe, someday I’ll finally make my lifelong bucket list trip to Australia.

 

Disability Committee Twitter Reactions: Why Do People Choose Cruelty Over Understanding?

The White House on a bright, partly cloudy dayA couple of weeks ago, someone published a tweet making fun of Vice President Kamala Harris for introducing herself at a Disability Committee meeting by stating her pronouns and describing what she was wearing. The tweet comes with a link to a video so followers can hear for themselves: “I am Kamala Harris,” the vice president says. “My pronouns are she and her, and I am a woman sitting at the table wearing a blue suit.” The poster claimed it was “one of the weirdest things” they’d ever seen and said the video left them LOL=laughing out loud.

Disability advocates who responded to the tweet explained that the vice president was introducing herself to a Disability Committee, and that giving a description of her appearance like that is “accessibility protocol” for people who are blind or visually impaired.

A few followers responded with short replies like “Thanks, I hadn’t thought of that” and “Oh, that makes sense.” What was shocking was seeing how many of the loyal followers took their cue from the influencer and left rude comments about people who are blind or visually impaired — ridiculous replies like, “I wear glasses, do I count?” and “What if you’re color blind?”

Declaring something as “accessibility protocol” and the idea that people choose cruelty over understanding has left me pondering two questions:

  1. What makes people be this mean?
  2. Who decides what qualifies as “accessibility protocol”?

Pretty heady questions, eh? I had to do some research! If you ask me, we could have all the assistive technology and accessible protocol in the world, but if we can’t conquer the fear average people have about disability and address the assumptions they have about us, disability discrimination and ableism will never go away.

Philosopher Bertrand Russell said that fear is one of the main sources of cruelty, and that: “To conquer fear is the beginning of wisdom.” I don’t see enforcing “accessibility protocol” as a good way to conquer the fears people have about us – at its worse, it could leave people worrying about doing or saying the wrong thing and not engaging us at all.

Being blind or having another disability does mean we do some activities differently than someone without a disability, but “helper tools” can make nearly all activities possible. I am blind, and in the past year or so I’ve attended more and more events (live and virtual) where the speakers or participants are told to “self-describe” themselves before starting their presentations. You know, for the “benefit of people in the audience who have a visual impairment.” But asking people to describe what they look like can be awkward. It points out what people who are blind or have visual impairments are lacking.

I haven’t asked many of my friends who are blind what they think of self-describing. They might enjoy hearing people say what they look like, and if they do, that’s great. I’m not going to call them “weird” or make a joke about it just because it’s not something that personally benefits me.

As for the accessibility protocol itself, I’d like to have whoever it is who decides what accessibility protocol is to figure out who needs it, what situations come up where they need it, and think of ways to make changes less complicated. Hopefully, this way of implementing “accessibility protocol” will begin to build bridges.

 

When it Comes to Disability Inclusion, Ignorance is Not Acceptable

A woman smiling in a purple shirtEvery July since 1990 when the Americans with Disabilities Act (ADA) was passed into law, I’ve felt the urge, or more accurately the pressure, to write something thoughtful that includes the essential message that disability is just one of many factors of the human experience and those of us who live with disability are no less human for the experience. Of course, I deliver this message all the time both at work and in my personal life, not just during Disability Pride Month. I have been delivering this message since I was old enough to understand that a lot of people have a large knowledge gap about disability and their fear of what the experience might be prevents most from really thinking about it beyond something to avoid at all costs. As a result, this fear/avoidance translates into poor performance when encountering people with disabilities and a world designed without due consideration of the needs of all the people living in it. Yes, the ADA and similar laws were passed to help offset this discrepancy and we are seeing an improvement in the design of buildings, public spaces and when really smart people are involved, less discrimination in the workplace and in service delivery.

While my 43-year career has focused on increasing equity for people with disabilities, disability is also deeply personal for me. I find that at 63 years old, I am well and truly angry about disability discrimination and the willful, continuing ignorance that allows that discrimination to linger and even grow. I find that some people are only giving lip service to disability equity while they are all too ready to abandon the concept whenever it is openly challenged. Technology companies large and small develop software and web-based applications as tools to enhance productivity in the workplace, and every day I struggle to keep up because how these technologies interface with my screen-reading software is at best inconsistent, cumbersome and lagging behind every upgrade release, or at worst never considered at all, making it difficult for me to compete with my colleagues. I’ve instead risked my health over the years by developing a pattern of overachieving in other ways in order to make myself a beneficial employee despite the difficulty in filling out time sheets or collaborating on documents in shared spaces. The fact that this has been necessary frustrates me. True equity would afford me the opportunity to maintain employment while being an average worker. The number of people who I personally know who are blind and who have been seriously injured by drivers who didn’t see them because they weren’t considering pedestrians as they maneuvered their vehicles through traffic, continues to grow, while legal remedies for such negligence are still mostly nonexistent, and this enrages me almost beyond rational thought.

So, am I turning into a curmudgeon who shakes her fist at all perceived infractions against people with disabilities in this still mostly inequitable world? Probably not, though I reserve the right to shake my fist when I feel like it. I still believe that the best path forward is to continue to educate and allow people to build their knowledge base around disability and evolve into a social consciousness that no longer shuns diversity, but I’m also done pretending that ignorance is acceptable. It’s just not. Most of what people need to learn about the disability experience are things I can’t actually teach. Real change requires that knowledge shared is internalized, processed and used to inform thought and action. Each of us must take on that responsibility for personal growth if we want to really create change. So rather than waiting for me and others like me to teach you what you need to know about disability, try educating yourself.

The next time you are walking around the neighborhood, think about what the experience would be like if you were sitting in a wheelchair. How would that change your line of sight as you look around? Would it change the path you choose? What would it feel like? Is the path smooth and easy to roll across or are there barriers that limit progress?

Stop wherever you are right now and use senses other than vision to experience the space you are in. Close your eyes if that is helpful, but it’s not necessary. Just focus on sound or smell, or touch. What do you hear? What can you deduce about your surroundings through sound alone? How would adding touch to the experience improve what you know about what is around you?

When people are asked to think about what it is like to be blind, they spend a lot of time thinking about the not seeing part. I get it. It scares a lot of people and makes even more feel uncomfortable. But you’re not being asked to go blind, just to think about it rationally. What happens after you spend an inordinate amount of time pondering the concept of not seeing? Can you make yourself work past this just a little bit to think about alternative ways of accomplishing the things you already know how to do? Would you really choose to give up on experiencing life because one of your five senses doesn’t work like everyone else’s? Isn’t it more likely that after you are done wallowing in this sense of loss for a while, that you’d start to adapt? And once you start adapting, might you also then start to consider how to build some serious skills that would provide even more independence? And if you’ve made it this far, can you entertain the notion that there are advantages to developing a better sense of touch, hearing, smell, and taste? Might it actually change your view of life around you because you now have additional perspectives from which to observe the world?

So, this is my disability pride message for 2022. I’m blind. I use my other senses and select tools I find useful to do the same things everyone else does. I’m not amazing. I’m not subpar. I am a subject matter expert in a few things, and am of average intelligence in a lot of other things. I try to be kind , but I’m not very patient. I am generally upbeat, but I can also be a grouch with a sharp tongue.

Wait. Is this becoming an song? “And what it all comes down to is that [we] haven’t got it all figured out just yet. I’ve got one hand [on my cane] and the other one is giving a peace sign.”

 

My Journey to Disability Pride: I Wasn’t Always so Proud

Ben Trockmen smiling in front of an office buildingMy Disability Pride month story starts with the truth – I wasn’t always so proud.

15 years ago, lying in a hospital bed in Atlanta, I was insecure and depressed. I was paralyzed.

At first, I didn’t want to live – it all just seemed too hard to handle. Life wouldn’t be the same and wouldn’t be worth living. A few weeks passed, and I was halfway convinced I was living in a bad dream. Surely, I would soon wake up to my old life, where I could walk, throw a baseball, and wax my truck.

After a few months, the reality of my injury slowly set in, and I started to accept what had happened. In doing so, I regained a bit of my humor, but lacked confidence.

As I tried to cope with my new normal as a quadriplegic, I was incredibly lucky to have a unique security blanket in the nurses and therapists at the Shepherd Center. Shepherd, a traumatic brain injury and spinal cord injury hospital, was an excellent place for me and my family to learn our new normal. It was at Shepherd where I got my first wheelchair, learned voice recognition, and started my first therapies.

Shepherd was full of people who understood spinal cord injury. As I rolled around the hallways halfway dressed, a halo attached to my head, and a ventilator tube attached to my neck, no one looked at me differently. We were all normal. We were all there to support each other. It was home.

After four months at Shepherd, I returned home to Evansville, but I felt very vulnerable. No longer were we surrounded by nurses who always knew what to do. We were “out in the wild” of the world, where most people didn’t know a thing about spinal cord injury. It scared the hell out of me.

I can distinctly remember my first trip to the movie theater in Evansville. My friends were ecstatic to check out the newly released “Superman,” who coincidentally – with the influence of Christopher Reeve, a fellow quadriplegic – had quickly become my new “superhero icon.”

We loaded up in my big, clunky blue van, and made our way to Showplace Cinemas. That first van we owned was awful. It was way too big, it rode terribly rough, and worst of all, IT WAS A VAN. As a young man who prided himself on his bad ass trucks, I was now stuck in a blue Ford van! Depressing.

As we parked at the theater, I felt a tingle of excitement to check out a new film, and bond with my friends. But, I was nervous as to how people in the movie theater would react to the sounds of my ventilator (much like a loud Darth Vader breathing) during the quiet parts of the movie. Would that bother people? Would I be an inconvenience? I told myself all would be okay.

“Errrgg……” the bulky ramp folded out from the side of the ugly blue Ford van. It was time to get out.

I rolled out on the pavement in front of the theater, and it was in that moment I was struck by a sight I’ll never forget – a school bus full of kids staring straight at me, watching my every move. Panic.

I knew those young kids were judging me. This wasn’t the experience of the Shepherd Center, where everyone knew about spinal cord injury. I was outside my element, and I was, quite literally, paralyzed with anxiety. I didn’t want to go see a movie anymore. In that moment, I wanted to go home.

“Just breathe. Look away. Don’t worry about it. Let it go,” I told myself.

Knowing going home wasn’t an option (my friends would have kicked my butt for cowering down to some kids), I tried to act as nothing happened, and we continued to see Superman with most of my initial excitement. The movie was lovely, a trip out with my friends was fun, but those daunting sets of eyeballs – and the following fear of insecurity as a person with disability – was blazed into my memory forever.

Years later, I look back on that moment – a still young, newly injured Ben – and I’m proud of how far I’ve come. In fact, I often share the story of “those damn kids” when I speak to audiences about my journey after spinal cord injury, and the pursuit of confidence, and regaining my sense of humor and purpose.

At that time in my life, I was insecure. I still am to some degree, but I’ve become very proud of who I am.

If those kids were looking at me today, I’d say “hey, what’s up y’all” and wouldn’t think twice about it.

I was once very insecure about my disability. After 15 years, graduating college, working a full-time job, finding my advocacy voice as a National Ambassador for Easterseals, traveling across the country to advocate for accessible airlines, and even running a political campaign and getting elected – I’m damn proud. And yes, that very much includes my disability.

As we celebrate Disability Pride month, it’s more important than ever to discover what makes you proud of who you are, and even more importantly, the journey that got you to where you are today.

My Disability Pride story starts with a simple trip to the movie theater, how about yours?