The Runway of Dreams Celebrates Disability in Fashion

by Erin Hawley

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. 

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 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 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.”

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

by Beth Finke

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?”

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.

Q. 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

by Yolanda Green

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.

Let’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

by Blog Writers

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.

This 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.

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

by Blog Writers

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.

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.

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

by Alicia Krage

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.

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

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.

Why We Need to Teach About Disability in Schools

by Blog Writers

by Rachel Handler

When I work as a disability-rights advocate and begin my talks on disability inclusion, I always start with a personal story about my time in the hospital. At twenty-four years old, I had just graduated from Westminster Choir College with a musical theatre degree and could NOT wait to start auditioning for Broadway. Since I was six years old, my dream was to perform in Broadway musicals on a big Broadway stage. My parents spent so much money on dance classes, acting
lessons, and voice training. Once I turned that tassel on my cap, I was ready to make them proud.

But before I had the chance to find an agent and book a Broadway show, my dreams came crashing to a halt. A car accident less than two short years after graduation permanently altered my body, thrusting me quite unexpectedly into the disability community. As I was lying in the hospital bed, fluttering in and out of consciousness, I had no idea what my life would look like as an amputee. I had never even seen a prosthetic leg. I had never really thought about disability,
disability representation, or the lack thereof, until it directly affected me.

Now, I proudly flaunt my leg as I speak at schools about diversity, equity, and inclusion. How I wish my school didn’t shun students with disabilities into separate classrooms. How I wish I’d seen disability representation on my screen and in my favorite theatrical shows. How I wish films like Crip Camp were required viewing in all schools and educational platforms. How I wish things had been different 10 years ago when I was lying in that hospital bed, and how I wish it was even more different for kids today.

Disability inclusion and awareness has progressed tremendously over the past few years in educational settings, but there is still so, so, so much more work to be done. If I were an amputee during my high school years over a decade ago, I do not think I would have considered a career as a musical theatre artist to be a viable option. Just ten years ago, there was no Ali Stroker, and there weren’t disabled bodies in commercials, or good, authentic disability stories on my favorite TV shows. But if I were a high schooler right now with a prosthetic leg, I would absolutely go for it — study musical theatre and chase those Broadway dreams! That is progress, that is the power of diverse representation. However, by choosing to have a career as a disabled artist, I also know that my auditions and opportunities will still be far more limited than my nondisabled peers.

When I speak at schools about resilience and overcoming challenges or finding opportunity in challenges, the students quickly want to know my leg story. I openly share the details of that day, while reminding them that every person with a disability is different and some may not want to talk about how they became disabled. For a lot of us, that question could be asking us to talk about the hardest day of our lives. But once the students hear the leg story, so many new, more thoughtful questions arise. One of my favorite questions from a 1st grader was, “what was the hardest part about losing your leg?” What a doozy! And what a gift to receive such a layered question. Children are so thoughtful and curious. When given a bit of knowledge about equity, diversity, and inclusion, their perspectives often shift and they instinctually embrace our unique differences as humans.

The only time I ever thought about disability in school was when two boys with Down syndrome started swaying back and forth in their chairs in the auditorium during study hall while everyone else was quiet. When I look back on my schooling, especially my high school experience, I am furious that disability inclusion and disability history was nonexistent. It wasn’t even an afterthought, it just didn’t seem to exist. Even in college, my campus was completely inaccessible. In all of my seventeen years in school, I never had the chance to experience a thoughtful presentation or discussion of disability. To be fair, I don’t think there was much attention paid to serving awareness and advocacy for any underrepresented minorities at my schools. Which is also a complete travesty.

It brings me immense joy to be invited to speak to so many schools and colleges throughout the year about disability awareness and inclusion. I feel excited to be part of the disability pride movement and inspire our youth to keep the progress going. One fourth grader mentioned that she was sick of so many talks about anxiety and depression, and appreciated me speaking about other types of visible and invisible disabilities. I couldn’t help but smile at her complaint; what an amazing problem to have — too much information and discussion on mental health! I think the college students I speak to could have used those discussions when they were in middle and high school. Often, college students are so busy and overwhelmed that they only come to hear me speak about disability awareness when it’s part of a class or for extra credit. Some students may also just not care — this is probably because, like me before my accident, disability isn’t even on their radar.

Up until the 1970s, there were Ugly Laws in America that aimed to keep poor people with disabilities hidden away. Those laws don’t exist anymore, but in a lot of ways, that mentality persists. Especially in schools. Isabel Mavrides-Calderon recently asked disabled students to share their experiences with emergency drills in the classroom. I will end with some of their horrifying responses:

“I am a deaf college student. I can’t hear alarms. I have no way of knowing if there is a fire while I am in my dorm alone. At the beginning of the year, I asked my college to have someone designated to check in on me if there was a fire. They told me this wasn’t needed because my friends could just do it. During a real fire, everyone evacuated and no one checked on me in my dorm. I don’t blame my friends; it’s an emergency situation and they aren’t trained for this. I wish the school would listen to my needs.”

“I was ten when my school had our first active shooter drill. Students were instructed to get into the closet. I’m in a power wheelchair, so I was left out, alone. Teachers and classmates told me it wasn’t a big deal because it wasn’t real. But then, it was real. We had a threat of an active shooter at my school when I was thirteen. Once again, everyone got in the closet and I was left out, terrified. Luckily, it was a false alarm. But it showed me how dispensable my life was to
others and that they had no real plan for my safety. I still don’t feel safe going to school.”

About the author: Rachel Handler is an actor and filmmaker based in NYC. She won the AT&T Underrepresented Filmmaker Award for her short, “Committed” and the Sundance Co//ab Monthly Challenge for her script, “The A Doesn’t Stand for Accessible.” Since joining the disabled community, she’s found a passion for writing and producing, and advocating for inclusion in every project she creates. Her writing credits include the award-winning short films, “HOW MUCH AM I WORTH?” “Andy & Kaliope,” and “Authentically Me,” which won the Reelabilities 27 Second Film Competition and screened in taxi cabs throughout NYC. Handler’s films have screened at Slamdance, Hollyshorts, Bentonville, Heartland, Newport Beach and more. Handler’s TV acting credits include “Law & Order: SVU,” “New Amsterdam,” “Interview with the Vampire” and “NCIS: New Orleans.” She just finished performing Off-Broadway in “The Lucky Star,” and other favorite stage credits are Marian in “The Music Man,” Lady Anne in “Richard III” and Maria in “The Sound of Music.”

Because I Am Disabled

by Blog Writers

by Rebecca Twitchell

Easterseals ad from 1990.

When I was young, I saved this Easterseals ad [shown left] from a magazine, and I have kept it ever since. It sums up exactly how I felt when I was a child and how I feel now. I have actually never considered my hand a disability because I have not let having only two fingers on my hand stand in the way of doing something I really wanted to do … but it has definitely come with its share of insecurities. 

Since I was young, I hid my hand because I have always wanted people to meet me, before it. It was easier to feel liked right away than feeling like I was different, pitied, made fun of, or judged. For most of my life, I felt ugly. And the self-deprecation was very real. I put myself down every single day. While I was sad when the kids teased me, sometimes I didn’t think they were wrong for doing it. 

As I grew older, my insecurities started to become a major obstacle. I was consumed with anxiety that someone would see my hand. It was a 24/7 worry. I wore baggy, long sleeved shirts and sweatshirts all the time, even at the beach, on the volleyball court and while bartending in college. I was good at hiding it. Awesome at it, in fact. When I WOULD let people know of my secret, they would always respond with “I had no idea! And who cares?!” I understood the sentiment. But I cared. And I always will. 

I believed that no one would ever fall in love with me. That I would be on my own. Why would anyone willingly date someone who looked like me?  

Hiding my hand eventually caught up to me in my profession as well, and held me back from the person I did not even know I could be. I would stay quiet at meetings. I never used my voice because I didn’t want people to look at me. I would never volunteer to present in front of a group. I would even position my desk/computer at an angle so that I would not be surprised by anyone coming into my office — because they might see it.    

And yet, when I reflected back to how I actually lived my life over all those years, despite hiding my hand all the time, I began to realize that I never actually let it stop me from doing the things that I really wanted to do.  From volleyball to bartending, I started to see themes of independence, strength and overcoming obstacles in the way of my perceived impossible. I started to shift my way of thinking about my hand to one of more positivity. And that shift allowed my mind to become flooded with very different thoughts, ideas, and opportunities for personal growth.

It wasn’t until I realized and embraced the fact that I actually had a gift — something unique that not everyone had —  and a story to share to support people with their own insecurities that I start to unlock my true self. I transitioned from a place of hiding to a place of sharing. I began using my voice — a voice which was actually being welcomed by those in the room.  

People were resonating with my message. Whether they had a disability or not, people felt heard. It was refreshing to them to know that they were not alone in what they were going through and what they were feeling. That there are others out there who are stuck in a rut of insecurity.   

And these were professionals. CEOs. Presidents. Corporate teams.  

It was another one of those moments when I was overcoming an obstacle in the way of moving forward personally, and more validation of the themes I saw in how I was living my life. It was a risk to lead with vulnerability, especially 18 years ago when it was not deemed professional to share personal stories, but I started to realize … this is what I am supposed to be doing.  

We are people before we are professionals. There is no way around that.  

I became more and more fierce with acceptance and nonjudgement with every group I facilitated and every individual I met. I intentionally worked on my listening skills. On listening to understand. On being present. On not working on a solution in my head during a discussion, but rather allowing my curiosity and care lead me with a follow up question so I could understand even more. 

Rebecca Twitchell, Founder & President of half full, LLC.

Today, we receive daily calls and emails from leaders and teams trying to figure out their workplace culture as they navigate what it’s like being back together after COVID restrictions. It is more important than ever for leaders to create an environment where employees feel heard, valued and respected. 

Every single one of us has something going on. And we will never truly understand what someone is going through. But we can begin with acceptance. With not judging. With listening to understand. With celebrating what makes someone unique and not comparing.  

I am incredibly proud of the career and business I have grown. And if given the chance, I would never change how I look. I am here for a reason. I have Symbrachydactyly Syndrome for a reason. I am a facilitator who helps individuals and teams move forward through their values, their culture and by being the best they can be as individuals and as a team. I am a reminder about acceptance of one another.  

Because I Am disabled, I am in love with my life.  (And my husband – I guess someone could fall in love with me after all!) 

About the author: 

Passionate about helping teams and individuals move forward, Rebecca Twitchell aspires to live each day as optimistically and realistically as possible. Her story is the backbone behind why half full, llc exists. Go ahead and shake her hand … and ask for the left one.  

A graduate of the Maxwell School of Citizenship at Syracuse University, Twitchell co-founded half full, llc in 2005 – a unique “do well, do good” business which provides custom team building, retreats, and workplace culture-driven experiences to teams and individuals looking to move forward with intention. “half” is about being a for profit business and the “full” is about giving back.  

After acquiring half full, llc from her partners in 2009, Twitchell enhanced the mission of the company to strengthen its commitment to corporate social responsibility. half full, llc offers personal and professional development retreats to teenagers in the Greater Providence, RI area at no cost.  

She and her team are known for their energetic and engaging facilitation style, problem-solving techniques, and keen ability to adapt and plow through any issues that may affect any clients locally, throughout the U.S., and globally (Africa being a favorite). Best for RI award recipient for its do well, do good business model, winner of the Small Business Association’s 2020 Microenterprise of the Year in RI and the entire Northeast, a graduate of the Goldman Sachs 10,000 Small Businesses program and the PI II Leadership Rhode Island class, she attributes these accomplishments to her team’s dedication to the vision, mission, and values of half full, llc — and her own personal commitment to always be listening and learning. 

My Disability Pride: Music, Songwriting, Advocacy

by Blog Writers

by: Jennifer Msumba

The “dis” in disability implies that someone is less able to do things. And while that might be true for some aspects of my life, I have realized that, in my case, autism has provided me with more abilities in many areas.

As a kid, I was diagnosed with challenges that go along with autism, such as sensory processing disorder and obsessive compulsive disorder. These challenges were very hard for me to deal with as a child. I struggled with what I called “getting stuck” on things and would spend hours repeating words or actions in order to soothe the urges inside my mind. I also was extra sensitive to my environment. Whether that be loud noises, crowds, or busy visual stimulation, I took it all in — yet had nowhere to put it. I would eventually burst into meltdowns of epic proportions, leaving my family, teachers, and even doctors perplexed at my behavior. I did not understand myself yet, and I could not verbalize my pain.

Jen as a child.

But whenever I heard music, my eyes would dance along to it, and my breathing would keep the beat. I was entranced. I could copy songs I heard exactly on the piano. I was extremely sensitive to others as well. My empathy toward animals and people in distress caused me to feel what they were feeling. I would take on their emotions, especially their distress, and feel it a hundred times stronger in my mind and body. This raised my anxiety, and I did not know how to deal with such a gift. I only felt the burden.

I spent years inside what I called glass — a thick, syrupy layer between me and the world. I went through depression, and I thought things were never going to get better. But there was a small spark inside me that would not give up. I would later realize this was the light I was given to shine in this world.

I spent years in sometimes abusive institutions, group homes, and “schools.” I was eventually put to work in a sub-minimum wage adult workshop. I bundled popsicle sticks into sets of twelve and put a rubber band around each pack for a national food company. I got paid a penny a bundle, which was combined with everyone else’s paycheck. So no matter how many sticks I bundled, I was paid the same as the person next to me sleeping on their desk. Yeah, not very motivating.

Little did these doctors and staff members know, but I actually have a genius IQ. My mind was always busy with ideas, and I knew deep down inside that I was capable of so much more. That all of us in that workshop were capable of more. But they chose not to see it or have the patience to help us cultivate our skills.

Fast forward to today. I have been living in a much more independent situation where I am allowed access to my musical instruments and technology. Once I got unfettered access to the internet, I blossomed. I started posting piano videos and watching other people’s video tutorials. I realized I could learn to do anything I wanted to. My thirsty mind soaked it all in. My passion for music was re-ignited! I slowly acquired recording equipment, software, and knowledge. I began writing songs, and in these songs, I poured out my stories and all of those emotions and observations that my sensory-sensitive mind had taken in over the years. I joined songwriting groups online and was told time and time again that I had a real lyrical gift. A different and bright future shined in my eyes!

Jen at a film festival.

Today, I realize that my autism, my disability, has enabled me to view the world in a unique way. And the things I have been through because of autism, although very difficult, have shaped me into the person I am. That little girl with two braids in her hair that hated herself is gone. I love who I am now. I have a blossoming career as a songwriter for film, television, and advertisement. I have acquired representation with a company that pitches my music to these different mediums. I was hired to write the theme song for the Easterseals podcast Everything You Know About Disability is Wrong, which is a huge honor. It was also a challenge … try fitting that title into a song, lol.

For this theme song, I used my knowledge of how it feels to be underestimated and patronized for being disabled. The frustrations. Being called an “inspiration” simply for existing as a disabled person. I harnessed my years of being targeted with that rhetoric, knowing I was not alone.

I have also become a speaker. I speak to young people in high school and college, as well as at companies and disability organizations. I incorporate music as part of my speeches, which I have found really engages the audience and helps us connect. And also, it’s just fun! The positive feedback I receive after speaking lets me know that I am making an impact on disability and how folks with autism are viewed and treated. This, along with the memoir I wrote, Shouting At Leaves, is helping to shape a new narrative around autism and disability, one person at a time. As we all work together in the disability community to bring change, we are helping ourselves, as well as future generations, to be seen as an asset in the workplace and the arts instead of being pushed into the corner, as my lyric in my song
“Atypical” goes:

Invisible
When I was young they diagnosed me atypical
Treated me like I was an imbecile
But I’m showing out now
Making all them sad cats sit back and meow
I take a bow

Don’t put baby in a corner
You can push me back all the way
I’m moving forward
Straightforward

I’m a child of God
I’m truly happy inside this isn’t a façade
Broad strokes
Don’t paint me with
I’m very specific in my craft, wordsmith.

Jen on stage.

Do I have disability pride? Heck yeah! I would not want to be any other way than who I am. Because of my disability, I am strong. Because of my disability, I am empathetic. Because of my disability, I am successful in a way that looks good to me. Did I have to take the long road? Yes, but I have landed exactly where I am supposed to be.

Jennifer Msumba is an author and award-winning musician on the autism spectrum. She won her way onto the stage of Fenway Park on August 24, 2023, as part of the Doug Flutie Jr. Foundation for Autism STARS of the Spectrum event. Msumba’s newest album, Atypical, illuminates her life story. From Highway 93, a sparse acoustic arrangement about her first psych hospitalization at age 15, to young adult longing for relationships, highlighted in the humorous yet revealing Minus Your Girlfriend, We’d Make A Great Pair. Jennifer has now found herself exceeding even her own expectations, outlined in the folksy anthem Up, which wraps her album in the most uplifting way.

Blindness Has Its Benefits: Recognizing a Proud Moment

by Beth Finke

When I was 25 years old, I was diagnosed with an eye disease called retinopathy. That diagnosis led to a long series of doctor visits, laser surgeries, hospitalizations, and last-ditch efforts to save my sight. In the end, nothing worked. A year later, I was totally blind.

July is Disability Pride month. I am not ashamed of being blind, and I can’t think of a single circumstance when I had any trouble just coming out and telling someone, “I am blind.” Blindness has its benefits, actually. You get to walk arm in arm with people a lot, you can go anywhere with your service dog once they’re trained, and rather than judging people by what they look like, you have to judge them by what they say and what they do.

Beth and her service dog.

But none of that makes me feel particularly proud to be blind. I didn’t work hard to become blind, and I don’t expect to get any awards for not being able to see.

So ever since Easterseals asked me if I wanted to write about Disability Pride, I’ve been trying to figure out what disability pride actually means. I looked for some books that might explain it all and found I could especially relate to this paragraph of the Disability Pride book that is part of the Understanding Disability series:

Some people view disability as something wrong or bad, which can make people who have disabilities feel bad about themselves. This negativity can also impact the rights of disabled people, like getting access to school or access to voting. It can make nondisabled people treat disabled people unfairly.

Is there any event in my life that left me feeling proud to have a disability? Proud to be blind? I thought and thought about this, and finally something came to me: I could write  about the time when a live theater in Chicago asked me to be a tech consultant for a play there.

Here’s what happened: Early on in my blindness, I got word that the University of Chicago was staging Wait Until Dark at their renowned Court Theater and looking for a tech consultant. The play is about Susy, a woman who is newly blind and married to a man who can see. The cast wanted to learn more about what life for a couple like that is like, and guess what? I am married to a man who can see, and I was newly blind when they were staging this show. I used my talking computer to email the stage manager and let him know I was interested. His response came immediately, asking if I’d be willing to come by at rehearsal show them the ropes. I answered right back with an enthusiastic, “yes!”

I didn’t lose my sight until I was 26 years old, so I’d seen Audrey Hepburn in the film version of Wait Until Dark on TV when I was a kid, and I had found the film absolutely terrifying: it centers on a “cool-as-ice criminal who smooth talks his way into the home of Susy, an unsuspecting blind woman who has no idea she has valuables hidden in her apartment.”

During the first rehearsal, the actors and I just sat in a circle and talked. One actor — he might have been the guy playing the criminal — asked, “If someone was standing in your apartment, not moving and not saying a word, is there some way you would just sense they were there?” Nope.

Another cast member asked, “If a person you’d met before came your way again, but this time disguised his voice, would you know it was him?” Absolutely not, I told them.

Truth is, I’m horrible with voices. Example: passers-by in my neighborhood often call out a friendly ‘Hello, Beth!’ but unless they tell me who they are, I really have no idea who is greeting me. If they disguised their voices, I’d be totally clueless.

“But that’s just me,” I reminded the actors. “I don’t speak for all blind people.” I tried to explain that we all have different skills we use to make our way, and the cast seemed to understand exactly what I meant.

“How do you think the friends you’ve made since you were blind are different than the friends you made when you could see?” This question came from Emjoy Gavino, the actress who’d be playing the lead. After thinking it over a bit, I said, “I think the friends I’ve met since I lost my sight are surprised to find out they actually like me.” The minute that came out of my mouth I worried it probably didn’t make sense. I tried to explain. “People want to meet me so they can think they’re cool, they’re open-minded, you know, they can tell other people that they have a friend who has a disability. And then, if they take the time to get to know me, they’re surprised to find out they like me.” Another cast member phrased it better. “They’re surprised to find out there’s more to you than being blind.” I nodded.

We sat in that circle for almost two hours – they’d ask questions, I’d answer. We’d get off subject, then back on track again. “This is probably a ridiculous question…” they’d start off, then ask some of the most interesting questions I’d been asked since losing my sight.

Then, time was up. They had to get back to work and rehearse.

And that day, dear Easterseals blog readers, marks the first time I came to understand what the words “disability pride” might mean. I felt proud to serve as a tech consultant at a well-regarded Chicago theater, proud to work with so many talented and creative theater-types, proud to be asked so many intelligent and important questions, and proud to be listened to when I answered them.

And I felt especially proud to be included in — and welcomed to — a group of talented people who now knew what it feels like to have others judge you by the way you look without bothering to find out there’s more to you than your disability.

My sighted husband Mike and I  were awarded free tickets for Wait Until Dark’s opening night, and lead actress Emjoy Gavino was surrounded by well-wishers at the toast in the lobby after her performance. Somehow she manage to make her way towards Mike and me before we left.

After uncoiling from our congratulatory hugs, Emjoy said she had a present for me. “I thought of writing you a thank-you note, but I knew you wouldn’t be able to read it by yourself,” she said, pressing a CD into my hand. “Its music Susy would have listened to.”

Recognizing the quizzical look on my face, Emjoy explained. “When I’m playing a role, I like to put songs on my iPod that the character would listen to. It helps me get into the part.” She reasoned Susy would be a jazz fan. You know, Greenwich Village in the 60s. “There’s some Miles Davis, other jazz. Oh, and Joan Baez. Some Bob Dylan tunes, too,” she said. “I copied them from my iPod onto this CD for you.”

Such a beautiful, thoughtful gift. A perfect souvenir. The opportunity I was given to be a part of a live theatre production was that as well: a beautiful, thoughtful gift. And I was proud to receive it!