Because I Am Disabled: Autistic and Working on Films

National Disability Employment Awareness Month. Two disabled people using laptops

by Scott Klumb

Because I am disabled, I have fought through the highs and lows of employment and have found my stride. After years of trying different jobs in customer service and mental health, I have ultimately found my place in filmmaking.

As an autistic adult, I have an extremely high attention span that others could only dream of. This is a common trait amongst autistic people, and when it comes to filmmaking, seeing the details is key. On set, I am able to keep track of nearly everything to make sure the film shoot goes smoothly and that the continuity of the footage all matches up. When there is no time to plan ahead, I can visualize a storyboard in my head with post production in mind and have every shot work together wonderfully. Finally, in editing for post production, being able to see every little detail is crucial, even if it’s down to one little frame. Over the years, my editing skills have stood out to many people and I have continued to perfect my craft. I enjoy editing most every subject matter and am very good at incorporating music into my stories.

One of my most significant accomplishments was winning Best Editor of the 2020 Easterseals Disability Film Challenge which led to many life-changing opportunities. The theme was documentary filmmaking, and I made a film called Autism Ability, highlighting my life as an autistic creator. I had five days to create the film from start to finish. At the time, I thought I would participate in the challenge to simply give myself something to do because it was during the pandemic. Before I knew it, out of approximately 90 submitted films, I stood out as the “Best Editor.” This led to meetings with higher ups at HBO who connected me with other award-winning video editors from around the country. Some of these editors worked on shows such as Westworld, Dexter, and others. I was also connected with a movie-trailer company because they saw the potential in my editing and thought I would be a great fit with editing movie and TV trailers for Hollywood.

Since the 2020 Easterseals Disability Film Challenge, I have continued making films that have been in nearly 50 film festivals around the world and won 12 awards. As my film resumé continues to grow, I receive more and more opportunities to work on feature films, short films, and freelance projects. My film career is not just limited to editing, as I have also been asked to be the director or cinematographer. Just like any industry, some of these opportunities have come to light and others have fallen through the cracks. But regardless, work leads to work and I am getting more opportunities these days than I ever have.

Because I am disabled, I have the ability to hyperfocus. The National Institutes of Health defines the term Hyperfocus as “a phenomenon that reflects one’s complete absorption in a task, to a point where a person appears to completely ignore or ‘tune out’ everything else.” Hyperfocus usually shows itself with me when I am editing films. As soon as I get in this state of mind, it feels like I am so focused that nothing stands in my way. 9 to 12 hours of intense editing feels like I have only been working for five or six hours. I am so grounded that I rarely leave my chair, and I work throughout that duration of time. Sure, hyperfocus can have its struggles, but I have learned to flip the script and look at the bright side of hyperfocus and how it has helped me throughout my film career.

Because I am disabled, I have gained a level of compassion and empathy towards working with disabled people which separates me from other filmmakers. I see how accommodations can lead to success. My clients and team have frequently told me they have never felt so comfortable with a filmmaker and that it alleviated all of their stress. Because of my empathy, I am able to focus on other people’s experiences along with the finished product, versus just caring about getting the job done and moving on. This allows me to work well with others and know how to pace the filming so that my clients, especially disabled people, are not overwhelmed during the process.Closeup of Scott's eye

It has taken time to get to this point in my life and have the successes that I’ve had. But through perseverance, nearly anything is possible. I have had many other jobs as a disabled person including being a golf caddie and an adaptive ski instructor. Because of my high attention to detail when being a golf caddie, I could visualize exactly where the ball was going to go, which made me excellent at reading greens. I have held other jobs too, but have found that anything in customer service is extremely difficult for me because I struggle with handling social cues and communication. I have learned that holding a traditional job was out of the question for me and that I wanted to pursue my passion for film full time.

Don’t get me wrong — communication with clients as an autistic filmmaker can be difficult, but that’s why my friend who specializes in audio engineering also works for me at SMK Media. Not only do we work well together technically, he also helps me with emails and zoom meetings to alleviate the struggles I face with communication at times. In a sense, this is an accommodation for me. When clients work with my company, SMK Media, we require clear communication throughout the projects so that we are all on the same page and I can deliver the best product possible. Yes, I am disabled, but that does not mean I cannot have a successful career. I continue to keep my head up and work hard.

Because I am disabled, I am an award-winning filmmaker that people want to hire for their projects.

Scott Klumb is an award-winning filmmaker. He is a storyteller, cinematographer, and editor, knowledgeable in a wide array of film styles, including documentary, where he creates artistic films with meaningful stories to captivate his audience. Scott has found a passion for filmmaking, pursuing his talent both professionally and in his free time. Scott’s films have been in dozens of festivals across the world. The notoriety has been encouraging, but Scott’s primary focus is to encourage others and continue his growth as a filmmaker.

 

Working While Blind: Job Hunting and Inaccessible Hiring Practices

National Disability Employment Awareness Month. Two disabled people using laptops

by Alicia Krage

I graduated from Northern Illinois University in December 2019, getting a bachelor’s degree in human development and family sciences. I wasn’t quite sure what I wanted to do with it — my original plan was to go to graduate school and get my master’s to become a counselor, but I was already starting to get burnt out — but I was determined to figure it out. I loved my classes and was sure I could find something in my field, since it was broad enough that it would allow for many different opportunities. Even if my first job out of college didn’t align perfectly with my degree, I felt accomplished walking that stage and was ready to take on the world and tackle the job search.

A few weeks before the pandemic started, I got the opportunity to observe classes at the Chicago Lighthouse teaching Apple products to newly blind senior citizens. Though it didn’t line up with my college degree, I enjoyed it. As someone who’s been using VoiceOver on the iPhone for 10 years, I thought I’d be well qualified. So, after observing and even being able to help, I applied for a volunteer position which would give me the chance to test my skills before taking a paid position. And then we were quarantined.

A picture of Alicia smiling, sitting on a couchMy life was at somewhat of a standstill for a while. Even when quarantine was lifted, there were still some restrictions. I felt like I didn’t really get the opportunity to explore much of post-graduation life or put myself out there to see what type of job I’d be looking for.

A while later, after not having much luck with the vocational rehabilitation services, I reached out to my university’s career services department to see what advice they had. They encouraged me to create a profile on Indeed and LinkedIn and search for jobs there, since it would allow for searches like “remote” and “work from home.” Ultimately, I opted for Indeed. My short experience with LinkedIn proved to be more frustrating than anything else. The inaccessibility of both the app and website made me more stressed than I already was looking for jobs.

While accessible, my experience with Indeed was not the greatest in terms of luck. I applied for countless jobs, but was always met with one of the following outcomes: I didn’t meet all the qualifications, never heard back, or would get halfway through the application process before coming across an inaccessible portion and not getting further assistance or accommodations for the parts that I could not complete. A lot of the jobs required some sort of assessment as part of the application process, asking a series of questions that would often consist of different customer-service-like scenarios and giving multiple choices of how you’d handle said scenario. Sounds easy enough, but neither JAWS nor VoiceOver would read some of the questions. Some questions would involve pictures and wouldn’t let me skip to the next question. So, I’d reach out to the employer via Indeed, explain that I’m blind and could not complete the assessment, and would ask for accommodations so I’d get a fair shot. That was usually when I wouldn’t hear back. Or I’d get the very common and frustrating response of ,”can you have a sighted person help you?”

I don’t like to disclose my blindness if I can help it. I’d like the employer to see me as a qualified candidate for the position rather than immediately seeing me for my blindness, writing me off before they really get a chance to know me. But in some situations such as these, it was unavoidable. And yes, I could’ve had someone help me, but to me, that wasn’t the point. Their site wasn’t accessible, and I shouldn’t have to rely on someone sighted in my household (or even a sighted friend) to assist me. A company should be willing to accommodate. And if they weren’t willing, would I want to work for them anyway?

I even came across a job application for a blindness organization that wasn’t accessible. Some job applications would say that a driver’s license was required. Some asked if you had a license or reliable transportation. I didn’t have a license, obviously, but I did have reliable transportation. I got rejected.

Needless to say, I was very discouraged and started to lose my motivation. For a while, I wondered if it was maybe because of COVID. My life had been at a standstill for so long that I was almost accustomed to not doing much. One rejection after another didn’t help my motivation, either.

In early 2021, while visiting my partner in Houston for two weeks, I suddenly found myself wanting to visit all these places. The Lighthouse, their independent living center, anything that would allow me to network. It was a great feeling — suddenly feeling motivated again and wanting to work — but another thing occurred to me: maybe I needed a change of scenery. Maybe I needed something different. Maybe I needed to live somewhere with better transportation, better jobs, and just step out of my comfort zone and see if I liked living somewhere else. It was the first time I considered moving. But I was scared because Chicago is all I’ve ever known. So, I kept my job search to Illinois and looked remotely in Houston, not quite sure where I wanted to reside or even what I wanted out of life. I was stuck between wanting to take any job because it was there, and being particular with my job search because I did want to enjoy my first job out of college. I didn’t want just any old job. I wanted to be happy.

In 2022, I stayed in Houston for a month. I wanted to explore more of the city, meet new people, and do some networking. I also wanted to make sure my partner and I could live under the same roof. We’d been long distance for 2 years by then and going from seeing each other 4 times a year to every single day was a huge step. I wanted to make sure we could both handle it. I did a lot of networking, toured the Lighthouse of Houston, explored their transportation for people with disabilities, and noticed a different sense of community. There also seemed to be this sort of familiarity with blindness, like a lot of sighted people around us were completely unphased. And I decided — I wanted to relocate. I didn’t know when, but I wanted to. And I wasn’t comfortable moving without a job.

We are standing outside the restaurant. I'm wearing a sundress and he's wearing a blue shirt

Alicia and her partner, Juan

I switched my job search location on Indeed to Houston, checking the box that said I’d relocate. When I wrote my cover letter, I mentioned that I’d even be willing to travel for the interview. Nothing seemed to work. All the jobs I was qualified for required residency, so I never heard back. It didn’t matter that I was willing to relocate or that I’d travel for the interview. What mattered was that I didn’t live there.

After a lot of conversing, my partner Juan suggested that maybe I move first and then look for a job. We both agreed that maybe it would be beneficial for me to take some time to get settled first anyway, rather than moving and immediately starting a job. For blind people, there’s a lot more that’s involved in moving, especially out of state, like signing up for the para-transit service and any vocational services you might need. Once that was all set up, I’d look for jobs. So that’s precisely what I did.

In March of 2023, I moved from my hometown and relocated to Houston. Four months later, I began volunteering at the Metropolitan MultiService Center. I worked at the front desk, answering calls and inquiries about the center and the services they provided. I then attended an Abilities Expo in August. Various companies were there, including Fable, a company that works with customers to make sure their products, websites, and apps are accessible and compatible with screen-reading software. They were doing on-sight interviews, so I did one, followed by an assessment a few weeks later via Zoom to test my assistive technology skills. And at the end of August, I was hired as an accessibility tester.

My job search has been a long road, but it feels good to finally find something I love and am passionate about. It’s different from the traditional 9-to-5 job, as it’s independent contract work, so there’s no set number of hours. The pay isn’t hourly, but it’s per meeting, but accessibility is something I’ve always been passionate about. Whenever I come across an inaccessible app or website, I would often think, “I wish they would actually have blind people test these to make sure they work.” And so here I am — I get to do just that.

I’ve been living here for six months now, and I’m much further along than I thought I would be. Stepping out of my comfort zone and attending the Expo really gave me such a wonderful opportunity. I learned a lot about doing what I love, even if it’s a little off course and not precisely what my degree says. And even if it’s not a traditional 9-to-5. There are a lot of nontraditional jobs out there, and I think that mindset could really help disabled people find work. If you expand your horizons beyond the societal expectations of what we should be doing, you could find a lot of great opportunities out there.

Alicia Krage is a graduate of Northern Illinois University. She relocated to Houston, Texas in early 2023 where she found a great community of people with disabilities. She has a passion for writing, centering her posts on advocacy, inclusivity, and relationships as a totally blind person.

 

Lights, Camera, Access: Employment in Media for People with Disabilities

National Disability Employment Awareness Month. Two disabled people using laptops

Editor’s Note: In a previous blog, Allison Friedman shared her perspectives about the educational system from the disability community. She also shared some of her own experiences addressing common barriers that people within the Deaf community might face when it comes to education. Today’s blog focuses more on Allison’s interest in creative arts and some of her experiences regarding employment in the media industry for people with disabilities.

Can you tell us a little more about your background?

Allison: I’m a professor and a disability advocate, and I’ve always had a passion for the arts. I’m involved in several programs trying to spotlight different walks of life for different individuals. I’m very passionate, creative, and I work in the film industry, too. Growing up, I was always very passionate about acting. Ever since I was about six or seven years old I would put on costumes like my mermaid costume and would beg my brother (he’s deaf too) to dress up with me so we could put on a show for our parents. And that started everything — that’s where my creativity started and got me taking on all sorts of projects.

ASL in Education: It’s Not Just a TrendAnd as an adult now, too?

Allison: Yes! Now, as an adult, I’ve been involved in all sorts of projects and even entered the Easterseals Disability Film Challenge.

Oh, yes. the Disability Film Challenge. I saw your entry, it is amazing!

Allison: Thanks! Our first short film will be out in about a few days. We’ve already entered the finalists and nominees, and I’m going to be going to Sony Studios in California, a huge accomplishment in my career.

Wow, Sony Studios, that’s amazing. So, on that topic of the Disability Film Challenge, I saw your entry, They. It was great. What inspired the creation of that?

Allison: That’s a good question. So my team, along with my partner and a few friends, all got together and we were very interested in artificial intelligence, AI, and how it’s been a huge development right now, globally. So we ran with that theme. We produced a film that is loosely based on the movie Her, which was about a man’s journey with AI and how that love story developed. We decided to change it to They to be more inclusive and fit our non-binary audience…to be more applicable to today’s day and age. Our movie shows the world of AI with a Deaf connection to it and gives us a glimpse of what the future looks like with AI and the Deaf community. It’s a love story and it all came from that concept.

And it’s kind of taking that sci-fi, futuristic, “can we imagine what’s possible?” We should have more media out there about that. On that note, what drives your passion for TV, media, and theater? How does it connect to your education work that you mentioned earlier?

Allison: That’s another good question. TV, theater, media, that’s always been my passion. In college, I was involved in the media club, and that’s where I realized that I really enjoyed doing media content development, directing, things in that realm. And then from there, I’m a content creator myself, and I also do advocacy work, writing…and that led me to wanting to change the world’s perception.

That’s also where I connected to both passions with film. I am an ASL professor myself, and I do show short films in my classes to my students to show them what it’s like to look through Deaf eyes. And I’ll use media to help the students understand what it’s like to be Deaf, what it’s like to be in the Deaf community. So yeah, that’s pretty much it.

Bringing understanding to people through film — that’s one of the most powerful mediums. How has being part of the Deaf community contributed to your success?

Allison: Every child needs an advocate. So they need a community in order to thrive. I’m very thankful to my Deaf community and the signing community as well. Interpreters, CODAs. They really helped me thrive and become confident in who I am today.

I think that shows in our own existence today. We have our own language, our culture, our own community, a sense of belonging, and that’s what we’re working on now to show the world who we are. Without the Deaf community, I wouldn’t be here talking with you. They really helped me to thrive in my education and basically my everyday life, and I’m a huge advocate for that as well.

 

The IEP is the Foundation of a Disabled Student’s Education – This is Why They Are Necessary

Back to school with Easterseals. Photos of disabled children in school, with friends and with teachers.

by Dom Evans

The first time I realized I was different because I’m disabled was in kindergarten. It was 1986. I was five and a half, and the school I was attending didn’t want me to attend. The previous year, they had given me testing. I still remember being a teenager and discovering the test results in a drawer stating that my grade level was above first grade for everything but math (first-grade level for math), but because of my disability, they didn’t want to enroll me.

Dom as a young child, wearing a blue sweater

Dom as a child

“She is intelligent, but shy to answer questions. We fear she will be unable to handle the emotional toll of her deficits at school.”

I had an older brother who used to get extra worksheets from his teachers. During the summer, we would play school, and at four, I could add, subtract, multiply, and divide. I could also spell simple words. That didn’t matter to this small farm school in Northwest Ohio. I was “defective” to them, and they would try to prevent me from attending.

In finding this paperwork, I also learned that I had multiple IEPs. Unfortunately, I also discovered I didn’t have one every year. Did my mother not know that they were required yearly? Or did she just not care? I found IEPs for kindergarten, second, sixth, seventh, and ninth grades. This explained why I did not have accommodations.

I desperately needed my own aide who could help me with getting my coat on and off, getting my books, and generally being prepared for class. That did not happen. Instead, junior and senior year I shared my best friend’s aide since he also was a wheelchair user. His mother also must’ve been better at advocating for him since his needs were met. If he did not come to school though, I had no help or had to find a peer or teacher.

That was the school solution — have a peer do it for free. The problem is, I was not well-liked. I was picked on and tortured extensively. I’m even in a book about hate crimes outlining an incident that happened at my high school when I was in 10th grade. That’s how bad the bullying got. I was not exactly comfortable asking for help as a result of this. I did have two girls I trusted — one would sometimes help me get my coat on and off, so I didn’t have to wear my coat all day every day at school. Another would help me get my lunch tray. Other than that, though, I was on my own.

Unfortunately, I didn’t understand my own rights. I spent many days ill prepared for class because I never had the books I needed (could not reach my book bag or my locker). This meant my teachers often yelled at me and complained about me because I never had my books ready and often needed to interrupt class to get help. I also spent many days in my coat because I was too stubborn, afraid, or annoyed to ask someone to help me take it off.

When the peer who helped me with lunch was not in class, I sometimes didn’t eat. I would also skip class and sometimes sit in the elevator or in the accessible bathroom stall just so I didn’t have to go to class. Nobody ever noticed I was missing or said anything. It often felt like nobody cared if I was there or not, so if they didn’t care, why should I?

Dom in the 80s, wearing sunglasses and a cartoon sweater Luckily, I didn’t let this affect my grades, but I know many students who this would’ve happened to as well. I knew that I needed to get out of my current living situation and going off to college was the best way. That’s the thing that kept me motivated to keep working, but I have so many disabled friends I know that never tried because what was the point?

Having access to the bathroom was also a nightmare. Up until junior high, I could go myself, although there was a horrible bullying incident in second grade where a girl body slammed me with a door, and I flew across the bathroom and smashed into the metal trash can getting injured in the process. In junior high, I was forced to have my junior high classes at the high school (the two buildings were connected by a bridge) since the junior high building was not accessible.

The high school bathroom had accessible stalls, but I couldn’t use them. I would go from 6 a.m. until 3 p.m. without going. When I was in ninth grade, one of my teachers started helping me use the toilet so I didn’t have to hold it. It was a private situation the school didn’t even know about. This teacher went above and beyond to help. I am very grateful to her, but she was risking her job to help me.

Because I didn’t have regular IEPs, the school was ill-prepared to handle situations that affected my needs. In elementary school, there were battles over forcing me to run in gym, go ice skating, or participate in basketball — none of which I could do physically. In every case, it was always presented as my fault that I could not do these things. But by junior high and high school, I was no longer required to take gym at all thanks to a doctor’s note.

This also meant they could get away with kicking me off the school bus in fifth grade. The bus driver would grab my hand and pull me onto the bus, but that year he told me I was “too fat” and I was kicked off. My mother ended up having to take me to school at 6 a.m. before she went to work, and I would sit in a dark classroom and wait for my peers and teacher to arrive. By junior high, I was finally allowed to ride the short bus.

All the failures I saw at school were because my disabilities were not accommodated. This also set me up for a lack of understanding about how to accommodate myself in college where I had to advocate for myself. It’s been a huge learning curve about understanding how to access services, get what I need, and feel like I deserve accommodations. I believe the way my educational career started had a huge impact on all of this.

When considering schooling for yourself or your child, you must start with the IEP. Not having one led to many difficulties, and it also allowed the school, my teachers, and my peers to treat me in ways that no disabled person should ever be treated. Schools must understand that we are entitled to education. We are entitled to learn. We are entitled to accommodations and it’s their job to provide it. Setting a foundation for school that begins with discussions about how participation can occur is foundational to all of this.

Start with a good foundation at school and work from there — that’s the key. I didn’t have one and I’m still struggling to get over the effects of my poor education at 42. I hope for better for the next generation.

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.

 

The Runway of Dreams Celebrates Disability in Fashion

Mindy wearing a big floral dress on the runway and spinning

Mindy Scheier. Photo Credit: Runway of Dreams Foundation

On September 13, Adaptive and accessible fashion was center stage. The Runway of Dreams Foundation, a public charity that empowers people with disabilities through inclusion in fashion and beauty, hosted the event at the Powerhouse Arts building in Brooklyn, NY during the highly popular New York Fashion Week. As an organization that promotes and celebrates innovative design, this year’s theme of A FASHION REVOLUTION called for models with disabilities to come down the runway in the latest apparel and footwear from companies like Tommy Hilfiger, Zappos, Steve Madden, and Target. Victoria’s Secret also unveiled their first-ever Adaptive Intimates line. As with every Runway of Dreams show, every model highlighted the diversity of disability. There were models of different ages, BIPOC models, wheelchair users, cane users, folks with limb differences, little people, models with care assistants, and other presentations of disability. 

A wheelchair user on the runway wearing a green bra and lace pants

Elicia Tate. Photo Credit: Runway of Dreams Foundation

“Every runway show is better than the last,” says Mindy Scheier, founder of The Runway of Dreams. “The most exciting part of the 2023 A FASHION REVOLUTION was having 11 mainstream brands on our runway, including Victoria’s Secret, who decided that this was the runway to debut their Adaptive Intimates. Having women with disabilities on our runway proudly wearing Adaptive bras and panties that were developed with and for women with disabilities left me awestruck.”     

Mindy says conviction is what inspired her to start the charity in 2014, after 20 years working as a fashion designer and stylist. When her then 8-year-old son Oliver, who has Muscular Dystrophy, asked for jeans that he could button himself and wear over his leg braces, she adapted the jeans herself – and then conducted extensive research on how to mainstream and manufacture accessible clothing. In 2016, she partnered with Tommy Hilfiger to create the first-ever mainstream adaptive clothing line on the market.  

Caitlin, a leg amputee, stands on the runway in a flowered dress

Caitlin Connor. Photo Credit: Runway of Dreams Foundation

With an overwhelming response to the collaboration with Tommy Hilfiger, companies have been looking to hire people with disabilities to build their own inclusive and accessible offerings. In 2019, Mindy founded GAMUT Management, a consulting and talent management company that represents people with disabilities across fashion and entertainment.  

Mia Ives-Rublee, a client of GAMUT Management and one of the Zappos models in the Runway of Dreams show, also participated in the Easterseals Disability Film Challenge as a film maker and actor. “Being able to see yourself in clothes or on screen shows that you matter as a person; that your story matters,” she says. Mia also mentioned that disabled people are often excluded from media and fashion, even though, according to the CDC, 1 in 4 Americans identify as having a disability: “With that understanding, it is easy to explain to non-disabled people the importance of creating clothing for a variety of body sizes and needs. To understand those needs, disabled people need to be a part of the fashion industry from the designers to the board members. Working together, they can create clothing that is adaptable to wider body types and needs.” 

Mia using a wheelchair going down the runway with her service dog

Mia Ives-Rublee. Photo by Noam Galai/Getty Images for Runway of Dreams.

Advocate and model for Runway of Dreams, Caitlin Connor, agrees. “So many people in the disability community are left out of the fashion industry and shopping can be depressing. We need organizations like Runway of Dreams to show brands that we harness both buying and selling power and that disability impacts everyone at some point in life.” Caitlin learned about Runway of Dreams when searching for resources for her nonprofit Be More Adaptive, which is a one-stop resource and community for all things adaptive and accessible. “When I became an amputee through a traumatic accident, my world spiraled with confusion as I searched to understand my new life with a physical disability. While recovering from the accident, I was also pregnant and eventually got laid off from my job. It gave me time to research for as many resources as possible and led to me developing Be More Adaptive.”

A woman using a yellow cane and wearing a yellow top and black pants on the runway

Lachi. Photo Credit: Runway of Dreams Foundation

Runway model and music artist, Lachi, shared that we can change the fashion industry “…by supporting models who celebrate their disability as a unique part of their identity, or by spreading awareness to adaptive fashion brands and disabled designers, and by embracing the cutting edge, newness of the disabled body and the untapped stories it tells.”  

Lachi is another participant of the Easterseals Disability Film Challenge, with the “Unlucky in Love” short film alongside Imani Barbarin and Rachel Handler. Like the Runway of Dreams show, Lachi says, “the film challenge proves that there are as many opportunities as there are ideas, that we create our own opportunities, and that we need to stop waiting to be discovered and need to start being the discoverers. Both the Runway and the Challenge allow folks with disabilities to cut their teeth in fashion or film and to grow among a supportive community of peers, allies, friends, and collaborators.” 

Fashion isn’t just the stylish clothes we wear – fashion is expression, empowerment, and a part of culture. Lachi is a big fan of what she calls “glam canes” – white canes used by people with low vision to navigate and bejeweled with rhinestones from top to bottom. She has a cane to match every outfit. “It’s an instant showstopper, icebreaker, and leaves an impression,” Lachi says. “It also allows me to celebrate my blind identity in a very bold and sophisticated way.” 

Self-expression and community are at the core of the Runway of Dreams Foundation. It’s evident in how supportive models are of each other … Evident in the hundreds of people who attend the runway show with enthusiasm and pride… shown through the diversity seen at every event … bringing people with and without disabilities on the same path toward possibility and inclusivity. And, with the efforts of such an incredible community, we are seeing progress in fashion – with much more ahead. 

 

The Joy of Educating Kids About Disability in School

Back to school with Easterseals. Photos of disabled children in school, with friends and with teachers.

Before schools went on summer break this year, my Seeing Eye dog Luna and I were invited to do a special school program at The Admiral, a senior residence where I lead weekly memoir-writing classes for older adults who live there.

Goudy Elementary is a Chicago public school located so close to The Admiral that the third-graders can walk there. They do exactly that every Friday to attend a “reading buddies” program sponsored by the Admiral. Each third grader reads out loud to an assigned Admiral resident, their “reading buddy,” and the Admiral Reading Buddy reads aloud to their third-grade buddy, too.

Things went a little differently the Friday Luna and I were there, though. “Instead of having the children work with reading buddies today, could you give a special presentation to them about what it’s like to be blind?” they asked. “And could you have your Seeing Eye dog with you, too, to explain how the dog gets you where you need to go?”

Beth sitting in a classroom of kids sitting on the floor listening to her speak. Her Seeing Eye dog is beside her.

Teachers at Goudy emphasize social awareness with their third-graders. Students there benefit from having the ability to take the perspective of — and empathize with — others from diverse backgrounds and cultures, including people with disabilities.

So of course I said yes.

I love doing presentations like these for schoolkids, and the request to have my Seeing Eye dog with me was no problem: Luna comes with me everywhere I go!

Very few of the children had family members or friends who were blind, and none of the children had ever met a Seeing Eye dog before.

The timing of this visit was perfect: the “Understanding Disabilities” series of children’s books from Cherry Lake Publishing, in partnership with Easterseals, had been released a month earlier. Each book in the series is written by an author with a disability, and I wrote two of them: Service Dogs and What is the Americans with Disabilities Act? Weeks earlier, I secured 50 copies of the Service Dogs book, which meant that after our presentation, I’d be able to send each third grader a copy of the book to take home with them.

The afternoon was delightful, and so were the children. They arrived well-prepared, each of them holding a card with a question they wanted to ask me when it was their turn. Every single child told me their name, then introduced their question, a la, “Hello, my name is Sunil, and here’s my question …” Their older reading buddies were also there but sitting further away. Again, no problem — I just made a point to repeat each question so the older “Reading Buddies” could hear it too.

I have a habit of getting longwinded when I answer questions kids ask me, so I’ll limit myself here and only answer the questions that challenged me the most.

Q. How can you dress when you don’t see?

A. I have all sorts of systems for keeping track of my clothes. If a shirt is black, I put a safety pin in the tag. If a shirt is white, I put a paper clip in the tag. Every piece of clothing I own that is black has a safety pin in the tag, and everything that is white has a paper clip attached to the tag; I just memorize the color people tell me my other clothes are and figure out which is which by the way they feel.

Q. What if you need to go somewhere and your dog is sleeping?

A. I wake her up.

Q. How do you write books if you can’t see?

A. I learned to type on a keyboard when I was in high school and could still see — I wasn’t blind until I was 26 years old, and I still have the keyboard memorized. The computer I use to write books comes with a speech synthesizer. The speech synthesizer calls out letters as I type so I can hear and fix any mistakes as I go. I can manipulate keys on the keyboard to read a page of type by word, line, or paragraph when I want to check for spelling and grammar. Over the years, the synthesized voice has become more and more human-sounding, but when I let people hear it, they usually say it sounds like something out of a science fiction movie.

Q. Is it scary being blind?

A. It was scary at first, but I went to a special school for a few months to learn how to use a white cane to get around, how to cook and clean for myself, how to read Braille and stuff like that. I have been blind for so many years now that I’m used to it and it isn’t scary anymore.

Beth her fifth Seeing Eye dog, Luna. It’s their Seeing Eye graduation photo, taken outside the Seeing Eye School in Morristown, NJ in January, 2020Q. How does your dog know where it’s going?

A. I have to be the one who knows where we’re going, so when we get outside in front of our apartment building, I hold onto my dog’s leash and harness, turn the way we need to go, and give her a command she learned at the Seeing Eye School she went to: “Luna, forward!” She pulls forward, and I feel the pull by holding the back of her harness and follow her lead.

Q. What are your biggest challenges if you are blind?

(Note to blog readers: this was my very favorite question of them all –the question told me that the kids had enough empathy to understand that being blind could be challenging sometimes, and they weren’t afraid to ask me what some of those challenges were).

A: Oh, there are lots of challenges, but rather than focus on the things I can’t do – I can’t play video games, for example – I focus on the things I can do. I know how to play the piano, and I know how to swim and can go to the beach, and I can write books, too, and get to bring my dog with me wherever I go!

Easterseals partnered with Cherry Lake Publishing Group to come out with the “Understanding Disability” series to explore disability in a comprehensive, honest, and age-appropriate way. One of their goals was to open the door for critical conversations about disability to young readers, and those questions the Goudy Elementary School students asked me that day tell me they are eager to learn.

The senior who’d emceed our presentation that day sent an email message to Luna and me later, thanking us for our program and especially for the books: “I want you to know that when I held up the books to show the kids, they were so excited and happy!”

What a coincidence: I am excited and happy about those books, too. Even now, months after that presentation, thinking that some of those third-graders might have brought their new Service Dogs book to read to their “Reading Buddies” the Friday after our presentation makes me smile.

 

ASL in Education: It’s Not Just a Trend

Back to school with Easterseals. Photos of disabled children in school, with friends and with teachers.

Editor’s Note: Allison Friedman is an educator, advocate and artist with experiences addressing common barriers that people within the Deaf community might face when it comes to education. Among the many things she does, she provides ASL access for people in the Deaf and blind community. We had a conversation about the importance of inclusion in education, including what others may not realize about Deaf culture in today’s “trendy” landscape.

Allison Friedman: A young woman with long wavy hair, smilingLet’s talk a little bit about your background. How did you get where you are today?  

Allison Friedman: I grew up in Chicago, Illinois. I’ve always had a passion for the arts and I’m a professor and an advocate. I’m involved in several programs that are trying to spotlight different walks of life for different individuals. I’m very passionate, creative, and I work in the film industry, too. I help people get an insight into what it is like to be a person with a disability.

You have a lot on your plate, it seems.

Allison Friedman: I do! But from here, I do want to go ahead and talk about my journey as a Deaf individual and being a part of the disabled community.

What would you say is one accomplishment that stands out during your career?

Allison Friedman: Oh, that’s a tough one. I do have several, but the one that sticks out happened when I was working at Columbia College in Chicago. They invited me to do a TEDx presentation, and gave me a theme for it: essence.

Wow. That’s a pretty broad topic! What did you come up with?

Allison Friedman: My presentation focused on sign language and human connection. I am passionate about sign language and ensuring Deaf children have access to their own language. For the project, we surveyed several Deaf children who were language deprived, including my own father, who, for 13 years, didn’t have access to any of those resources for him. That really hit home for me.

 I can imagine why –13 years old without any of those services?

Allison Friedman: Yes. My father, again, he didn’t have language until 13 years later. My grandparents didn’t know that there was a Deaf school.

So, your father never went to school at all?

Allison Friedman: Oh, he finally did go — as soon as my grandparents found out there was a school for the Deaf, they sent my father there and that’s where he really thrived and came into his own being. All those resources available for him there played a huge impact in his life.

How about you? What was your schooling like?

Allison Friedman: Growing up, I didn’t see ASL in the public, not until I was older. And that’s why I’m really thankful to social media and also Gallaudet University. American Sign Language wasn’t really recognized as a language until the 60s. And having it recognized as a language and also being validated as a community was really beneficial to us.

Nice! Sounds like advocating and teaching and helping people understand more about the Deaf community is paying off! What is something you wish more people understood, actually really got, about the deaf community and ASL in general?

Allison Friedman: I’m happy that ASL has gained more recognition globally, but Deaf children are the ones in crucial need of it. That’s something I want to really emphasize. Again, my father didn’t have language until 13 years. ASL is something very trendy now and something that’s seen as pretty cool. I want the world to know that ASL is not just a trend, it’s not just something to have fun with, but it’s actually some people’s main mode of communication for everyday life. I really want to emphasize that having language accessibility for children is what we need. There’s an irony in it being such a trend lately — seeing it at speeches, during the singing of the National Anthem, more out in the public in schools and colleges — while Deaf children still struggle sometimes getting access to ASL.

 

Navigating College with Depression: Advice for New Students

Back to school with Easterseals. Photos of disabled children in school, with friends and with teachers.

by Mids Meinberg

Going to college represents a major shift in every young student’s life. Now considered by society to be an adult, a freshman experiences an unprecedented freedom in managing their schedule and their life. This greater freedom is then coupled with an increased difficulty in coursework, leading to a large amount of stress. To further complicate things, turning eighteen is also when a lot of mental illnesses begin to present themselves more powerfully. This increased stress, these newly emergent symptoms, and the relative absence of a support network can make the first year of college nearly impossible to navigate for some.

A person with short hair wearing glasses and a sweater vest, smilingThis is the situation that I found myself in during my first year of college. I went an ocean away from my family and friends to a prestigious school. My depression was making itself known in a way far more intense than anything I had ever experienced before, which was coupled with finding the academics of college a struggle, a first in my life. The sense of failure began early in the semester and continued to snowball throughout the year, with every failed test and missed assignment piling into an avalanche of guilt and remorse that I lacked the tools to escape from.

I flunked out of Rice University at the end of that year and the repercussions of that failure have lingered with me ever since. I have struggled both economically and mentally because of my inability to get a degree. Rice offers a need-based free ride scholarship to all students attending, paying for all of their expenses above what the family can be reasonably expected to contribute. I wound up attending other schools and accumulating debt in my effort to complete education, debt that I would not have had if I completed my education at Rice. In addition, the shame I felt, however unreasonable, has remained with me, intensified by and intensifying my depression.

My situation did not have to unfold the way it did. Resources are available in most colleges for those that need them, but these resources can only be accessed if you ask for them. It would have helped a lot if there were those in the community who could see how I was flailing, how I was unable to meet the demands of the coursework, and were willing to take that first step in helping me to get the aid that I needed. Instead, I allowed the compounding guilt to make me think that I was too late to ask for help, even when there was still time to turn things around.

A crucial understanding that it has taken me decades to realize is that my failures were not my fault. It wasn’t a lack of academic preparation or a lack of “intelligence” or a lack of drive that led to my failures. My failures were rooted in my disability coming head-to-head with structures that were built to inhibit disabled people from succeeding. Indeed, so much of the cultural constructions around “laziness” are built upon ableism and a failure to understand how disability affects the ability of a person to do work in the same way as a nondisabled person.

Now, just because higher education is structurally and systemically built upon ableist principles, this does not mean that the individuals working within academia are inherently ableist. I found a lot of success in my later academic career in speaking directly with professors about my failings and struggles. Being clear in why and how I was struggling led to a greater understanding from my professors and a willingness on their part to meet me halfway to ensure that I was able to achieve the success that we both wanted out of my time in the course.

Not every professor is going to be so welcoming, but there is no harm in making the attempt. A professor refusing to help is a sign that they are not someone who you want to take courses with in the future. In that case, dropping the class might make the most sense. While dropping courses feels like a major failure, it’s merely a re-evaluation of your position and the ability to get some breathing room. One of the things I struggled with heavily in the beginning of my academic career was taking an overloaded course load in an attempt to finish college earlier. A slower but steadier course load is much more likely to achieve success for any student, but especially for any disabled student considering the extra challenges posed by higher education.

A tall building, historical looking, on a college campus. The building has a big archway.

Rice University

In addition to these one-on-one approaches, there are additional tools that can help a disabled student achieve success in higher education.

First, most colleges and universities have programs to help disabled students with their specific accommodations. Researching the options available at any school and then using them can result in removing a lot of barriers. While these options will rarely help with the laziness myth, every advantage can be useful.

For those with mental illness, counseling options are usually available, which can include access to medication. While new students with newly intensified mental illnesses may struggle with accepting counseling and medication, the impact on one’s success not just in school but in life can be life saving. Thankfully, the shame around therapy has decreased since my time in college, but you should not allow shame to stop you from seeking these vital aids.

Second, most colleges have tutoring services available for all students. Again, shame and doubt may keep a student from pursuing these options, especially students who had excelled in high school, but it is important to remember that the use of these services does not reflect a personal failing but rather a need to overcome ableist structures. This tutoring can serve a vital function in helping a student to structure and order their time on campus – something that can be a huge barrier for students with mental illnesses.

Third, disabled students can form study groups with classmates in order to handle homework assignments and prepare for tests. Even if you have more barriers to overcome, higher education is difficult for every student new to it. By working together, classmates can find the ability to succeed despite these new difficulties. In addition, these study groups can serve as vital support networks and the start of new friendships which can help anyone to achieve their goals in higher education.

If I had pursued any of these options when I first started college, I would have found my experience far easier and likely would not have struggled as I have for so long. Hopefully this advice can help others get the help that I didn’t and make college a surmountable challenge.

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

 

As I See It – Disability Education and Inclusion

Back to school with Easterseals. Photos of disabled children in school, with friends and with teachers.

By Scott Klumb

In the world of education, we need to have more inclusion and representation in early and higher education. We have made great strides in improving disability education and inclusivity through K-12, but we still have a long way to go. Creating space to educate others on disability is imperative to making sure people have a better understanding of the disabled community. This can be done through the academic setting as well as other creative avenues.

As an autistic person with Central Auditory Processing Disorder (CAPD), not only did I struggle academically in a traditional school setting, but socially too, as I was bullied for most of my life. The bullying began in preschool and continued throughout my entire education. I was scared to go to school because of the bullying, and I was also nervous to share it with my family or my teachers. I didn’t want the school officials to intervene due to fear that the bullies would pick on me even more.

When I was pursuing higher education, it was going well, and most of my teachers were very accommodating and accepting of wearing a microphone that would allow me to process everything they were saying while I wore a headset. But one semester, I went up to my new instructor showing her my accommodation paperwork, which included wearing a microphone for my CAPD. She looked at me and said, “you don’t honestly expect me to wear that, do you?” Then she laughed at me and looked at the classroom and said, “don’t you all think I speak loud enough?” The class then began to laugh with her. This humiliated me in front of a large classroom and made me feel awful as a human being. I went home in tears and called my parents about it. We then reported it to my film school, and the teacher was fired. It is illegal to not follow state accommodations, and I was honestly in shock that I would come across someone that would question me. I feel for any other disabled person who has gone through something similar because we should never have to feel bad for being a disabled human being.

Looking back at my experience, I believe that if public and private schools beginning at the preschool level focused on the inclusion of the disabled community into their traditional curriculum, that disabled people would be more normalized. I believe that it would result in fewer instances of bullying towards disabled people in an academic setting. This can be as simple as reading stories to young children that include characters who are disabled, to inviting people with various disabilities to volunteer directly in the classroom or have them read to the children during story hour. Allowing the schools to create a community that is inclusive to everyone will ultimately create more acceptance and inclusivity for disabled children. It is important to teach that there is a wide range of disabilities, and that not all disabilities are visible. The majority of people that meet me can’t imagine that I have a disability. One of the biggest struggles for someone like myself who is autistic is that it is an invisible disability.

Scott Outside wearing a vest, arms outstretched, in front of the iconic Hollywood sign.Going into school, whether it is for early or higher education, can be scary because people can be quick to judge. People think they are complimenting me by saying, “you don’t look autistic” but the thing is, autism is a spectrum and doesn’t have a look. This can be extremely dismissive and anxiety provoking because someone should never have to explain why or how they are disabled because of another person’s ignorance. According to the Centers for Disease Control and Prevention, about 1 in 4 adults in the United States have some sort of disability. Because of this significant number, we need to be more open to teaching kids and young adults about disabilities as well as having fair representation that disabled people can go to school comfortably knowing that they will not be judged or bullied for being “different.”

We as society have been doing a good job of educating the disabled community so that they can reach their full potential, which should be the goal for all human beings. In Colorado, there are schools like TACT and the Temple Grandin School that are specifically focused on this goal for autistic people. Last Fall, I taught filmmaking at TACT (Teach Autism Community Trades). I was told by many teachers there that they have never seen the students so engaged. I think part of this was because the students knew I was also autistic and that we were able to connect on another level with our shared experiences. The students learned a lot and TACT will most likely have me back to teach again.

Educating people about disability doesn’t just have to just be in the school setting. A creative way to do this is through film. Films like Crip Camp and CODA are excellent for exposing students to the disabled world. Crip Camp shows how far we’ve come since the 1970s and how we can continue to push forward today. There are many disabled filmmakers who can speak to their films and do panels in a classroom through Zoom or in person.

I personally have a passion for filmmaking, and I love to educate people through my documentary work. I began by making my film called Autism: One Man’s Journey, which was a story about my life. My goal was to help educate people on the autistic experience as well as give others hope for fighting through the extreme struggles of mental health. My therapist, who is an autism specialist, always says that he learns about autism from the real experts, his clients who experience it every single day.Posted for Scott's movie, Autism: One Man's Journey: Hardship, Perseverance, and Hope. Raising awareness to late diagnosis. Scott with his arms wide, standing in front of a wall of graffiti that says "Autism".

It is important that we as a society can continue finding ways to normalize disability which can be the first step to acceptance. We can make sure that we are creating safe environments in the school setting to educate children about the disabled community to help prevent bullying. We can also use creative avenues to help others learn about disabilities in the hopes of creating a more inclusive world.

Scott Klumb is an award-winning filmmaker. He is a storyteller, cinematographer, and editor, knowledgeable in a wide array of film styles, including documentary, where he creates artistic films with meaningful stories to captivate his audience. Scott has found a passion for filmmaking, pursuing his talent both professionally and in his free time. Scott’s films have been in dozens of festivals across the world. The notoriety has been encouraging, but Scott’s primary focus is to encourage others and continue his growth as a filmmaker.

 

Growing Up Blind: My Experience in School

Back to school with Easterseals. Photos of disabled children in school, with friends and with teachers.

by Alicia Krage

I reflect on my education experience a lot, especially as someone who’s been blind since birth. I think a lot about how, from a very young age, I was very fortunate to have good educational resources.

I grew up surrounded by both blind and sighted peers. It was important to my parents that I met other blind children, but that I was also around other sighted individuals as well. As I’ve gotten older, I really appreciate this. I have a nice balance now of blind and sighted friends, and I think it also helps sighted people to be exposed to people with disabilities from a young age. It enforces the concept that we’re just like everyone else. This helped me become confident in my disability. I was never sheltered or seen as less capable.

I started with a teacher named Michelle as part of Parent Infant Education as soon as I came home from the hospital. For the first year, Michelle would come to the house once a week. After that, my mom took me to the SASED office after they contacted her.

This didn’t just impact me, but it was great for my parents as well. It taught them that I may be sensitive to texture — I didn’t like touching things or putting things in my mouth, which I hear is common amongst blind children — but also taught them things about saying the same thing before picking me up, since I couldn’t see someone approach.

This program then led to preschool. I started preschool at age three. My parents were able to meet the teacher, Marta, and visit the classroom. During my preschool education, I was in a classroom full of blind and visually impaired students. This is when I began learning Braille and was also introduced to the white cane. I learned about advocacy, navigating the school, and how to interact with blind and sighted children, and my parents learned about what I would be expected to do for myself.

A picture of Alicia smiling, sitting on a couch

Alicia

I began mainstream school starting in kindergarten. In every school I went to, there was the vision resource room where students who weren’t mainstreamed were taught, so sighted students grew accustomed to seeing us walk the halls every day. Often times, I was the only student in my classroom with a disability. I wasn’t often in the same class as my other blind friends. The only time I was in a classroom of blind and visually impaired students was my physical education class — they called it adaptive P.E. To this day, I still fondly reflect on my very first sighted friend I ever made. I don’t remember exactly what our class was doing — maybe drawing? — but I was just kind of sitting off by myself. I remember it was sort of a visual activity that I didn’t know how to join. I heard a little voice say, “why are you sitting here by yourself?” She took my hand and led me to her table to describe what she was doing. Even at the age of six, she was very unphased by my blindness.

As I got older and continued my education, from primary school to middle school and then on to high school, a lot of my education was like that: students were unphased by my blindness. Often times, I was the only blind student in the classroom. This wasn’t an issue by any means. Students were happy to read things on the board if the teacher was talking too fast. I even had a few offer to take notes for me. I declined, but I appreciated the gesture.

There were some moments when I had to explain a little more how being blind makes things a little different and sometimes a tad bit complicated.

One of my struggles was textbooks. Because Braille takes up much more space, textbooks came in volumes, and the page numbers didn’t often match the print page numbers. If a teacher told me to read chapter 6 starting on page 190, for example, it wasn’t always on page 190. And it wasn’t always just one book. Sometimes, multiple books had to be lugged around for reading homework.

Understandably, this was often a difficult concept for teachers to grasp — after all, people reading this post who don’t have firsthand experience with this are likely confused! This meant a lot of planning ahead. Sometimes, upon entering a classroom, teachers would have to tell me ahead of time what we’d be reading that week so I could retrieve the textbooks. Our books were kept in the vision resource room where blind students were taught and equipment was kept. To combat this page number issue I so often encountered, I’d use my book’s table of contents, but also ask sighted students to read the first few sentences of the chapter to make sure I was on the right track.

Generally, I loved how accommodating and patient my teachers were throughout my educational career. The only time I would ever say that it affected me as a student with a disability was having to get pulled out of classes for other things, like orientation and mobility training. Often times I was just pulled from something like study hall, or my adaptive physical education class, but if it was a longer trip — say, learning a bus system or taking the train into the city — I’d have to miss class. My teachers were patient and understanding about this, but I remember feeling like my classmates might feel jealous and wish that they could skip class, too. No one ever said this to me, but I never felt like I was getting special treatment. It was cool to take the day off sometimes for a mobility lesson, but explaining it sometimes felt strange.

Illinois School for the Visually Impaired. Building exterior with long columns

Illinois School for the Visually Impaired

All in all, though, my high school experience was great. I then attended the Illinois School for the Visually Impaired in Jacksonville. I hadn’t been in a classroom with just blind and visually impaired students since I was three. I was 19 now, so this felt brand new. I didn’t have any memories of my preschool days. I think this is when my confidence in my disability really flourished. Not only was I surrounded by people who had similar experiences and struggles as me, so there was that sense of camaraderie, but it helped me gain independence as I learned more about traveling and independent living. I shared an apartment, so I learned what it was like to have a roommate. My roommate was also totally blind. Teachers were accustomed to students missing classes due to orientation and mobility lessons, so that wasn’t as big of a deal. Even some of the teachers were visually impaired! It was a different environment and experience, but it was a very life-altering two years for me. It was my first time being far from home (the school was roughly 200 miles away from my hometown), and I felt very self sufficient. Since then, I feel like I’ve had a very positive outlook on my disability, carrying it and myself well as I move through the world.

I recognize that not everyone grows up with as many resources, but I am fortunate that I did. It helped me advocate for myself when I moved on to college, confidently requesting accommodations for assignments and extended time on tests. Dorm life was easier since I was used to being away from home. It helped me gain my confidence outside of school, too; I started confidently taking public transportation — cabs, buses, RideShare, and eventually taking a solo flight. My educational experience since I was born gave me the confidence to thrive and perceive my disability not a hindrance, but just a part of who I am. It has never defined me as a person, though.

As I have said to many people: It is part of my story, but it is not my whole story.

Alicia Krage is a graduate of Northern Illinois University. She relocated to Houston, Texas in early 2023 where she found a great community of people with disabilities. She has a passion for writing, centering her posts on advocacy, inclusivity, and relationships as a totally blind person.