If you have a school-aged child with disabilities, you’ve almost certainly had issues with their education. You’ve had issues with curriculum adaptations, accessibility, social inclusion and…. well, you can finish this list on your own.

The struggle has also probably gotten angry – more times than you care to admit.

I personally have had many days of anger and frustration when things have fallen short for my child.

Inclusion is hard. If it wasn’t, it would be happening on a much larger scale.

The fact that it’s hard doesn’t mean you should give up and stop advocating for what your child needs. But it does mean that it will benefit you to help others understand challenges which are likely not familiar to them. School professionals need to learn to look for your child’s abilities and to nurture them so they can help your child reach his or her potential. And they need to be aware of how harmful it is to assume incompetence.

Sadly, it often takes time and patience to make this happen. So get the conversation started early, continue it often, and make sure you have milestones against which you can evaluate progress.

To honor my son Tom who has faced these challenge for his entire life – below are Tom’s 7 rules for teachers that have students with disabilities. We both hope everyone will benefit from them.

Tom’s Rules

1. Admit that inclusion is difficult. It takes more than kindness and good intentions to teach a person with special needs. It takes work and knowledge. I know you want me to do well, but it will take more than wishing to bring about success. Please make sure you know what I need to succeed.

2. Don’t make incorrect assumptions about me or put a limit on what you believe. Most students get the benefit of the doubt. It’s assumed they can learn. But, let’s be real – when people have differences, too often others think we can’t! If strong preparation isn’t there, I’m at a huge disadvantage in terms of learning. And when people see that happening, they pull away. They assume I can’t learn. But often it’s not that I can’t learn, it’s really that no one has planned to give me the tools I require for learning.

3. Make a plan for me before the year starts. Learn about the adaptations I’ll need before I come into your class. Assistive technology and special adaptations needs to be learned. Don’t think that you’ll be able to wing it; t’s like thinking you can teach geometry without knowing how to use a protractor. (And, by the way, how does someone who can’t use their hands well do geometry? Or if you can’t hold a pencil, how do you do algebra? If you can’t answer these, how can you teach me?)

4. Ask for help when learning the ways to teach to my requirements. I have disabilities so I need special things in order to do my work, in order to be social, and in order to be included. So it’s likely that, even with planning, you won’t be familiar with some of the things that make me “me” – whether it’s a wheelchair, assistive technology, or behavior issues. It’s okay not to know. But it’s not okay to be too busy to find answers.

5. Don’t let me always be “the one who can’t do it.” There are many things I might not be able to do. But there are others who might want to do things I can! For example, I might have trouble fully participating in phys ed, class trips, or noisy lunch rooms. But there may be other students who’d rather do something else. I don’t want to hold everyone back when there’s something great for a whole class…. But there are probably ways where I don’t have to be the only one left out.

6. Understand that it is depressing and debilitating for me if you’re not prepared. If you talk to any student with special needs, you will hear so many stories about how they have had to settle for substandard materials and methods, and how often they have been in situations when class activities are not accessible or comfortable for them. But we are young students. And we have enough to deal with given our disabilities. It is really hard to tell people when things are not done well – or the way that is negatively affecting us.

7. Build a knowledge base and share it forward. Every year, teachers needed to learn about my needs. And it always happened after the year began. Imagine if other kids didn’t have books, or pencils. Imagine if other students had chairs that didn’t have sightlines. Imagine if they had to ask others to get out of the way every time they went down a hallway. Every year I had the same issues. Every year I had to start over telling people what was required for my appropriate education. Please build a better way to communicate the needs of people with disabilities. And please make sure that no one gets to enter a class of mine until they have the appropriate knowledge.

Help make every child a priority in school this year by supporting CPF’s Just Say Hi in the Schools (JSH) Initiative. JSH is an inclusion curriculum that is currently being launched in schools throughout the country. The initiative encourages the community to consider disability as a critical aspect of diversity by teaching kids to breakdown stereotypes, use inclusive language, and start conversations with their peers who are different from them. Help us expand the program today.

Here’s the Thing…

I love award shows. I always have. As an actor, I’d be lying if I told you I didn’t practice a speech in the bathroom mirror with a hair brush when I was little, or watch coverage of the Golden Globes, Tonys, Oscars, and even last night’s 70th Emmy Awards. I love the dresses, and the emotional speeches, and the hosts with their biting commentary on today’s world. There’s just one problem: Diversity. Sure, they sang a song about “fixing” it last night. But did they really? No. Diversity by definition means a “variety” but even in its actual definition, it misses including a specific group of people, those of us with disabilities: the inclusion of individuals representing more than one national origin, color, religion, socioeconomic stratum, sexual orientation, etc.”  And, I’ve noticed more often than not, that those of us with any sort of disability are relegated to the “etcetera” portion of the definition.

As a kid, I wanted to see myself on screen. I wanted to feel represented as a person with cerebral palsy, even my mild case. As an adult, and as an actor myself now, I want to be able to help kids with cerebral palsy, or any other disability, feel like they have a voice in the world. I want them to see that they do exist, because, oftentimes, if you don’t see yourself on screen, it’s as if you are invisible.

Inclusion has been a hot topic these past few years in the entertainment industry, which in and of itself is a wonderful thing. Inclusion needs to be about not just race or gender but giving the differently-abled a platform as well. From the casting of those of us with disabilities in disabled roles, to our stories being told, it’s important to be seen in the industry. Heck, we can play your lawyer, mother, boyfriend, you name it; and it should have nothing to do with one’s disability. I’ve always felt like I was in two different worlds, the disabled world, and the non-disabled world. There are moments when I’ve been seen as “disabled” and “not disabled enough” by casting, or just the people I interact with.  My case of cerebral palsy is either too noticeable for some, or not enough for others. It’s a weird conundrum, but it has fed my desire to bring a voice to our community. When I was 13, I had to learn how to walk again. As a coping mechanism, I named my wheelchair “Leonardo DiCaprio” so I could sit in his lap. I was going through puberty AND learning to walk again. Naturally, I would watch my favorite movies and television and dream of being on the screen. As a professional actor now, I have appeared on “The Marvelous Mrs. Maisel” (which won 8 Emmys last night) and have a recurring role on season 6 of “Orange is the New Black.” Having CP doesn’t define me, but it will always be a part of me. I remember talking with the writer and producer of my second episode of OITNB who said that she loved my work and had to have me back for a second time. At the end of the day, she came up to me and thanked me, and I did the same. Then, I stated how much it meant to me to work with her because I was an actor with a mild form of cerebral palsy. It was a joy to work with everyone, really. We were both teary-eyed and hugged, and she said it was a pleasure to work with me regardless. She still loved the work. That meant a lot. She didn’t notice anything “wrong” or different. It was, in her mind, just unique, and she even said that. My work is unique.

So, I am imploring you Hollywood, Broadway, and beyond to tell stories with disabled actors. Let us use our unique worldview to bring something to a character that’s our own. Our experiences are just as universal as an able-bodied person’s. We want to be able to walk, roll, and strut down the red carpet in a nice outfit, get up on that stage with the best of them, and thank our loved ones, and shout from the roof tops that we finally feel included. #IncludeUs

Written by: Stephanie Gould

Written By: Jessy Yates

I am a wobbly walker. I barely skim five feet tall. I have crooked teeth and temperamental skin. I use a wheelchair and have untoned legs.

Somedays I feel like the only place for people like me in the beauty and fashion world is on the on the “before” section of “before and after” makeover pages. There are multimillion dollar industries that make normal people look less like themselves based on arbitrary standards that seem to be decreed from on high. Judging from ads and media, it would seem that people with differing bodies from the tall, abled, white, cisgendered models don’t exist. It’s remarkable tough to remember who you are when billion dollar industries are telling you that you don’t or shouldn’t exist. These images insert themselves into surprising facets of our culture until we wake up with the first thoughts in the morning are how you can use the new day to fix something about you image, rather than using that day for work, joy, and emotional connection.

Being part of the disabled community also comes with frustrations about our image and self-worth. People tell us to our faces that they would prefer to be dead, than disabled. We are told from medical communities that we should be looking for cures at every turn. Recently, an amazing video of Cerebral Palsy Foundation’s Design for Disability Annual Fashion Show surfaced on Instagram. However, the comments (I know, I know, never the comments section…) seemed to question our beautiful models’ right to a place in fashion, design, and beauty–even in an event specifically focusing on design with disability in mind. It seems we have a long way to go to changing perspectives of who and what is considered beautiful.

But fashion ideals are rapidly changing. Diversity is selling fast and soon the days of model as blank canvas are being left in the dust. Designers are investing more deeply into community and diverse models are breaking boundaries left and right. It seems even old fashion houses that have previously been set their aesthetic are slowly beginning to change their habitual ways. We have compiled a list of movers and shakers that are changing the fashion and design game. Theses are some of my biggest role models that I look to when I feel frustrated about living in a world not made for people who exist in bodies outside the norm.

1. Jillian Mercado

Wheelchair using model Jillian Mercado began modeling when she scored a national Diesel campaign in 2014. Since rising to model fame, she has been public about being a proud Latina, Disabled women. However, recently she has begun to use her voice to disability advocacy. In a recent interview the Ministry of Ideas she said, “If you want to know what you can do in your workplace to expand the knowledge of accessibility? Hire, hire, hire. Hire people who have disabilities and you won’t have to ask these questions.” We cannot wait to hear about her more as she expands into voicing her her thoughts on disability rights.

2. Winnie Harlow

Supermodel with vitiligo, Winnie Harlow, has modeled for major international campaigns for Desigual, Sprite, and Swarovski and has been seen in editorial shoots for Vogue Italia, Dazed, i-D, and Complex. In an interview with Teen Vogue she said “Today I represent a different standard of what people traditionally consider beauty.” She is a part of a change that celebrates all bodies.

3. Chromat

We can’t talk about fashion houses that are at the forefront of pushing diversity during fashion week than make-up and bathing suite design house, Chromat. In the past two New York Fashion Weeks they have included models with prosthetic limbs, countless plus-sized models, and several transgender models. In  a review of Chromat’s year, Vogue wrote “Chromat offers something different—a glimpse of real women in all their glory, actively making fashion more interesting.”

4. Liz Jackson

Liz Jackson, a disabled designer, curator, and all-together bad a** is demolishing the rules for accessible design and making a trail of improvements and seismic shifts in her path. She has started The Disabled List, a self-advocacy collective of disabled designers fighting for employment, training, and mentorship opportunities for disabled artists and designers. She has astutely noticed that many brands that market “accessible fashion” and “disability design” are devised without disabled employees involved. In my go-to, most quoted, favorite recent article from Motherboard, she was quoted in saying ‘“There’s not a single company that has invited disability to the table…Nobody…It still hasn’t occurred to people that disabled people are the experts in disability.” She in an expert in examining the intricacies of accessible design to optimize agency for disabled individuals and will rightfully call out companies that claim accessibility without employing disabled creators. I can’t quite make a summation of all of Liz’s work in a small paragraph, so I encourage you to look for yourself.

5. Rebirth Garments

Inclusion is at the core of this independent designers work–in fact, radical representation for all bodies is the crux of their mission. Self-proclaimed “queer-crip” designer, Sky Cubacub, makes brightly colored, accessible, and edgy stretch wear that encourages the wearer to stand out and celebrate their diversities. Self-produced and run, Sky has made a name for themselves by designing for 10 year old drag-wonderkid–Desmond Is Amazing, RuPaul’s Drag Races Season 10 competitor– Vixen, and Brit singer Kate Nash (and yours truly…). As it stands, they’re one to watch and the neon makes ‘em hard to miss.

6. Louise Linderoth

A new comer in the fashion world, wheelchair using designer, Louise Linderoth, is cooking up the most fashion forward accessible-seated jeans I’ve yet to see. Recently partnered with Dr Denim, Linderoth has revolutionized the shape of the traditional jean. She has taken her experiences as wheelchair user and lover of denim to a revolutionary place, proving Liz Jackson right–disabled individuals are the best experts in disability.

7. D i s g r a c e

Recent FIT graduate, Grace Insogna, has been radically inclusive since she started. In 2016, Insogna participated in CPF’s first Design for Disability gala (and won) and I have been obsessed with her and her creations ever since. This year she made history by being the first student to send a plus size model down the FIT Senior Fashion Show runway.  Since graduating in may, she has launched a personal brand that has won praises from pop celeb, Lizzo. Additionally, her designs have been strongly pointed and has made garments that break the stigma of mental illness. In her Nylon interview she said “We can’t necessarily control how other people view us or what they say about us, but we can definitely change our internal narrative and shift it to one that’s more compassionate.” I couldn’t agree more!

I look to the people above when I waver, when I feel like everything about myself is wrong. I see other’s defying the odds in an industry that is unimaginably difficult and I remind myself that every body is a good body, because they’re the only one’s we got. And my heroes above are reminding the world of that.

TEENAGE DICK was commissioned and developed by The Apothetae, Directed by cast member Gregg Mozgala, a company dedicated to plays that explore and illuminate the “Disabled Experience.”

It is a brilliantly hilarious take on Richard III, Shakespeare’s classic tale of power lust, TEENAGE DICK reimagines the most famous disabled character of all time as a 16-year-old outsider in the deepest winter of his discontent: his junior year at Roseland High. Picked on because of his cerebral palsy (as well as his sometimes creepy Shakespearean way of speaking), Richard is determined to have his revenge and make his name by becoming president of the senior class. But as he manipulates and crushes the obstacles to his electoral success, Richard finds himself faced with a decision he never expected would be his to make: is it better to be loved or feared?

Tony nominee Moritz von Stuelpnagel (Present Laughter, Hand to God) directs Mike Lew’s (Tiger Style!) devastatingly funny, sharply written new play about perception, disability and the lengths we’re willing to go to rise above our station in life… and high school.

Watch the promo here!

Playwright Mike Lew explains how TEENAGE DICK came about:

“Gregg’s proposal to rewrite the classic tale of Richard III brought me a great deal of trepidation: why adapt Richard III as opposed to just doing another production of the original? And I think the answer to that is that if we’re to examine the disabled experience we have to both acknowledge and in some way disrupt our forebears. I’ve grown to realize Teenage Dick is part of a whole subclass of new plays that use existing works as a jumping-off point to say something entirely new, but more importantly to break up the canon and make more room for marginalized groups. I’m thinking particularly of Branden Jacobs-Jenkins’ An Octoroon (which re-appropriates Black stock characters from melodrama to redefine our contemporary understanding of Blackness), or David Adjmi’s 3C (which subverts the gay stereotypes from Three’s Company and the golden age of sitcoms), or Jiehae Park’s Peerless (which uses Macbeth’s Shakespearean ambition as a pointed critique of the stereotypes around Asian overachievement). In these plays adaptation is a subversive act. By undermining the dominant stereotypes of a marginalized group we seek to re-center that group so that they are the tellers of their own stories.

In my case Teenage Dick is meant to take the most famous disabled character of all time and challenge Shakespeare’s conception that Richard’s disability makes him inherently evil. Teenage Dick attempts to explode that old conception as well as its condescending modern-day cousin: that all disabled people are a metaphor for transcendence. (For a good year, Gregg kept sending me clip after clip of high school sports teams smugly including a disabled classmate on their team in a blatant attempt at demonstrative inclusivity.) It’s my hope that Teenage Dick takes all the drama and stakes of murderous monarchal succession and by cramming that into high school (which can also be life-or-death) we approach a contemporary resonance that a straightforward production of Richard III could never provide. But that is not the sole purpose of this adaptation. It’s also my hope that by exploding tired tropes about disability – those from Shakespeare’s time as well as our own – that this play will say something entirely new.”

Click here to get tickets!

We have been talking about what it means to truly be represented in media at Cerebral Palsy Foundation. Recently an article praising the 2017 movie, Wonder, crossed our paths. Our office is made up of a multitude of perspectives from parents of children with CP, to physical therapists, to people who met the disabled community for the first time through CPF, to a graphic designer with a masters degree and cerebral palsy, to myself–a professional disabled actor who is about to head of to get my masters at Yale School of Drama. We cover a lot of ground and contain a multitude of differing perspectives when looking at disabled representation in media.

Because being a disabled actor is how I make a living, I am quick to draw a hard line on representation. I am quick to chastise movies that use disability themes without casting disabled actors and hiring disabled writers. However, there is great validity in Algarin’s Mighty article, because for her family, it made the disabled experience a little less lonely and alienating, and that is certainly not nothing.

Everyone wants to feel seen. When you’re growing up, especially as kid who has a disability or is othered for physical differences, you desperately reach for media to contextualize your life. You reach out to see the parts of yourself that maybe you’re not so proud of, because you haven’t seen someone like you moving through the world yet. To see your experiences mirrored back to you makes growing up a little less lonely.

When growing up, as a kid with Cerebral Palsy, I voraciously consumed movies that had disabled characters to help me understand my place in this world. I did so almost secretly, not wanting friends and family to know that I really didn’t know how to be or that even though they cared and loved me deeply, they could never really quite understand the feeling of otherness that is moving through the world with a disability. In part, I think I also did this secretly, because the disability representations that I had at my disposal were, well, kind of bad quality and inaccurate representations of the disabled experience. I knew my family didn’t want to watch the movie Daredevil one more time. I knew that Friday Night Lights and Glee, both containing wheelchair using characters, dealt with the disability narrative as one of sadness, tragedy, and tear jerking moments–intended to make an audience cry. I was not proud of these tv versions of disability. I didn’t think of my cerebral palsy as tragic and I definitely did not want pity or tears. I just wanted to know that people like me existed and that existence was acceptable in a world that seemed so clearly not made for me. I used those shows, to place myself in context of a society, knowing those narratives were not mine, but an outsider’s perspective of disability–a perspective about my experience that played into my fears of how I was being seen as a tragedy to all of the abled-bodied people in my life. At the same time as I began rapidly consuming ill-fitting disability narratives, I began really solidifying my passion as a budding theatre actor and singer and I deeply wanted to know that a career for people like me in the arts was possible. As I got older and started to focus more on my future, I shifted my focus from simply searching for disabled narrative and to finding disabled people simply existing in the arts, media, and culture.

And I found next to nothing.

All throughout my childhood, I acted–from professional on-camera work, to school and community theatre to extracurricular coaching and classes. When high school guidance counselors and teachers encouraged us to think about our careers, my mind never really strayed from the path of the arts. It was always incredibly clear: I was going to be an actor and creator, and that was that. I was the most committed and experienced theatre student in my high school’s drama program by a landslide, but when telling my teacher what I wanted to do with my life and where I planned to audition for college I was met with the statement “well, you know you will never be cast, right?” My whole childhood was spent consuming stories about disability and yet, I knew my teacher was right. The world was interested in narratives about my experience, but not actually interested in real people like me. I decided if I couldn’t get cast, I would give up acting and take up directing and playwriting. If people didn’t want to see me, at least I could more accurately represent disability through writing. I so desperately wanted to change the one dimensional narratives from pity and inspiration to the real-life narratives of nuance, daily experience, and messiness that is disability. I wanted to see disabled people experience all facets of life. I wanted to see disabled mothers and fathers, disabled people who work in offices, disabled people who experience barriers of in access, but move on with their lives. I wanted to see disabled people who are romantic leads without their disability being the conflict of the plot.

I found acting again through mentorship and through representation. A year into my undergraduate experience at NYU, I saw myself in two fellow trained disabled actors for the first time. Ali Stroker was emerging on the scene as a fellow NYU graduate and wheelchair using musical theatre power-house and Gregg Mozgala, actor and artistic with CP, had just started his theatre company The Apothetae in NYC. At 19 years old and feeling alone, I sent Gregg Mozgala an a cry for help in the form of an email. I so desperately needed to evolve the way that I saw myself portray and even more desperately needed to know that there were professionals out there capable of strong work, who were doing the grunt work of being disabled actors demanding seats at the table. Since then, my role models who were in the trenches have begun to make history. Ali Stroker became the first wheelchair user on Broadway and (my now good friend) Gregg Mozgala has won a Lortel Award and is working at the top off-broadway theatres in NYC. Seeing people like you allows you to think that you’re worth a spot. The need to see people within the disabled community succeed is why I am, initially, quick to criticize projects that fall short of disability representation. I know first hand what authenticity can do.

Moreover, there are practical, economic reasons behind representation. Unfortunately, in 2018, employment discrimination for people with disabilities is a high ranking issue amongst the community and the arts is no exception. With only 1.8% of media having disability themes and 95% of disabled characters being played by abled bodies actors, it shows there is a clear lack of value being placed on authentic disability-based storytelling. Off camera, to my mind the only writers room of a major network show to staff disabled writers is Speechless, in which Zach Anner is a staffed writer (I would love to be proven wrong on this fact, by the way). The Oscar Winning movie, Shape of Water, had no disabled actors nor disabled writers when creating the project. It’s as if the only people to not profiting off stories about disability are disabled people themselves. Wonder’s box office totals to date grossed over $300.5 million, seldom of which went to any member of the disabled community. If a movie intended to shed light on the disabled experience fails to support the community in which it is representing, does that finely toe the line exploitation? For me, the answer is yes, but I am just one voice within the community.

That said, Cerebral Palsy Foundation and I wanted to hear about your thought about this. We opened up discussion on facebook and instagram and have gotten some incredibly thoughtful responses. One of Facebook community members, OS, mentioned that casting disabled actors simply because of their disability is almost as tokenizing as not casting them–which is a very interesting and good point. Disabled actors need to come to the table being rigorous in their craft. However, that becomes difficult in a world where training programs can be non inclusive and disabled people have less roles to be cast in, thus making them less experienced. Practice clearly improves skill, but how is a community to improve when they get less opportunity to practice? For me, this is a question of equity. What are we doing to create a more level playing field for disabled people in media? This might mean casting the less experienced disabled actor but investing in them via coaching and acting classes. You can read the whole exchange here.

Here’s what the community had to say on instagram:

Where do we go from here?

As I was writing this, CPF and I have been attempting to brainstorm actionable steps to more fully inclusive and authentic media representation. Candidly, I was asked “so if we are going to suggest that people shouldn’t watch the movie Wonder, what do we do? What is an alternative?” This is where I wish I didn’t come up short, but I do. Some days, being a disabled actor feels like carrying the whole world on your back up an out of a hole of harmful stereotypes of disability. When grade school children with disabilities want to perform, let them shine their light while making sure they are working just as hard as their abled-bodied peers. When doing disability awareness programing in grade schools, let students with disabilities write and perform their own stories. Give them the power to take control of their narrative.

Most importantly, look to leaders on the disability arts world who are taking their rightful place, such as Ali Stroker and Gregg Mozgala. Look to up and coming writer and actor with CP, Ryan J Haddad, who is currently in The Public Theatre’s Emerging Writers Group to  how to write your own story with charm and humor.* Or Mickey Rowe, a professional actor with autism, who is the first actor to play the lead character with autism in the Broadway and touring play, A Curious Incident of the Dog in the Nighttime.

For me, it was as simple as knowing I wasn’t alone. To be in good company makes it possible.

*Contains adult content

Written by: Jessy Yates