Last month, I attended a mindfulness workshop for the first time. I did this as a physician, a neuroscience researcher and the “good-enough” mom of a teenager with CP. As a physician and researcher, I skeptically looked forward to learning more about mindfulness practice, because there is evidence it helps with stress management, self-regulation, focus, productivity and happiness. As a mom, I felt that weird mix of guilt that I was going to focus on “not-my-children” for a whole day, excited anticipation and anxiety that maybe I would be a complete failure at this.

It turns out all the mental baggage I took into the workshop was the exact opposite of what mindfulness tries to achieve. The daily practice has since changed my life but that first day, I was not completely getting it. To show you what I mean, let me share the 7 attitudinal qualities that form the core of mindfulness according to my (very patient) trainer along with immediate reflections.

1. Non-judging: Ok, this one is easy right? As a physician, I practice this every day with the families of my patients with CP. I cannot possibly know or even understand what each caregiver and child experiences and how this affects the choices they make in their daily lives. My role is to support and steer them towards their goals, not to make judgements about what they have accomplished. But in mindfulness, “non-judging” is supposed to apply towards myself and my everyday thoughts. Ok- will work on number 1 because I am SO not there.

2. Non-striving: For the parent of a child with CP, not striving for the best, newest, most effective treatments and practices all the time is near impossible. But mindfulness reminds us to focus instead on every moment as it is, without always thinking about the next step. After all, even when my 14-year old yells at me to back off, he is asserting his independence, something I never dared to dream when he struggled to swallow pureed food without throwing up. I will not strive so hard to be a perfect mom…

3. Patience: Good one. I totally want to work on it. Especially when I have had enough sleep.

4. Acceptance: Here, it helps to NOT have enough sleep. I am too tired to do anything but accept.

5. Beginner’s mind: Finally, an easy attitude for me to cultivate!! I do find wonder in most every day, I get to be curious in my work and my life and absolutely love discovering what each moment brings without pre-conception. The word “curiosity” makes me happy. Oh look! My son figured out he could wipe his snotty nose with his new Benik splint!! No sarcasm, I actually feel the laughter bubbling up as I write this!

6. Trust: This is getting tough. I am so scared about my children’s future and whether they will be OK as adults, so worried that there is one more thing I could be doing for my patients, so stressed that all this research and all these ideas will not get out in time to help them…the downward spiral of my thoughts is so powerful. But mindfulness, and especially meditation on our breathing teaches us that after every inhale comes an exhale. I can trust in my breath, and then perhaps in my passion for helping, and my sense of wonder, and the strength of our team and the love I have for my children.

7. Letting go: This was the hardness part of the mindfulness workshop for me. So when our teacher asked us how we would incorporate more mindfulness into our lives I replied: “I will remember never to minimize how painful it is to let go.” Letting go of anger and grief, bitterness, disappointment and expectations, is hard. It hurts because I hold onto them like a safety blanket sometimes. And I know that if I cannot let go, I will not fully live this wonderful sweet life with my family, my patients and my incredible research team.

So if you read all the way to number 7, try out the Evolve 21 App, which includes a 21 day meditation program, and tell me which of these is hardest or easiest for you!

Universal design is a design approach that works to ensure that buildings and products can be accessed, understood and used to the greatest extent possible by all people regardless of their age, size, or ability.* Universal design is not a special requirement to benefit the minority of the population. Environments should be designed to meet the needs of ALL people who will use it. To put it simply, universal design is good design. Click here to learn more about the 7 principles of universal design. Below are some examples.

Communication between the employer and employee with a disability is the most important ingredient for success. Be transparent when having these conversations and be aware of the accessible transportation in your area. The majority of individuals with disabilities do not need expensive accommodations to succeed in the workplace.

This might seem obvious, but you’d be ahead of the curve if you included this type of initiative at your company. There are many ways to do this, you can partner with disability-related advocacy organizations or include people with disabilities in diversity recruitment goals. Learn more about how to recruit workers with disabilities here. Also be sure to check out the The Disabled List, featuring creative disabled people who are available to collaborate on projects, ideas and products created by designer and advocate Liz Jackson.

Personal stories go a long way. Bring in leaders that have disabilities and host a Q & A to get everyone talking and learning about disabilities. It can be as simple as a classic lunch and learn. A great example is Sofar Sound’s Outer Sounds Initiative – a 30 minute lunch and learn that features passionate humans of all backgrounds. In episode three they featured CP advocate and professional dancer, Jerron Marcel. He shared his thoughts on inclusive language, the spectrum of cerebral palsy, and of course – his career in dance.

This is a big one. Only 3.2% of people with disabilities identify as having a disability to their employers, but 30% of employees have disabilities. Why is 30% so surprising? Most employees with disabilities have conditions that are invisible to the eye. Only 13% of people report having a visible disability and 26% report that their disability is sometimes visible. Companies have also adopted disclosure on a “need to know” basis. Either way, disability disclosure is a sensitive topic that is completely up to the discretion of the individual, and not the employer.

Believe it or not, people have a ton of hidden bias against people with disabilities. Over 42% of employees with disabilities experience misjudgment and 20% experience avoidance on a daily basis. People with disabilities can be extremely valuable employees except often their ideas or ignored or not taken seriously. It’s 2018 and it’s time to break recognize people with disabilities as leaders and bosses and not menial workers. Take this quiz to uncover your hidden bias against people with disabilities and identify moments where you can change how you interact with people.

Some people love vacation because they get to visit interesting places, see cool stuff, try new activities, and eat with abandon. Our family enjoys all of that, but we also adore going away because of what we don’t do: stick with a schedule. When you have a child with disabilities, life can revolve around his therapies and appointments. On vacation, we’re all free.

Life was super-scheduled when Max was a tot; he got ten sessions of physical, occupational, and speech therapy a week, plus the occasional craniosacral session and hyperbaric oxygen treatment thrown in. Although the therapies have dwindled as Max has gotten older, he still gets a bunch, and also participates in various programs for youth with disabilities including:

-One occupational therapy session

-One music therapy session

-One speech therapy session

-Potentially another occupational therapy session with a different OT we just met that we will cram in somewhere because you don’t turn down sessions with good OTs who fall into your lap

-One visit with a teen friend through a Friendship Circle program

One activity program, also through the Friendship Circle

-PLUS! Eleventy billion visits to various specialists and labs throughout the year

-And a partridge in the pear tree. Oh, wait, wrong list.

We’re grateful to have a great therapist and doctor team for Max, along with decent insurance (for now, anyway). And to be sure, every child comes with their own demanding schedule; my daughter’s sport practices and games occur several times a week during the school year, and my husband and I constantly juggle who’s going to be home from work early to drive her around.

Still, there’s no denying that we often plan our weekends and spare time around the needs of my son. Vacation is an escape for us in many ways.

On vacation, there’s no scheduling our days around therapies or visits to doctors, and no dealing with bills.

On vacation, there are no “I’m tired!” pleas from Max when he doesn’t feel like getting OT after school and no “Cristy’s waiting for you in the living room!” nagging from me.

On vacation, there is no homework to pore over with Max, going over the same material again and again and again because that is how he learns best.

“Expose him to as much as possible,” Max’s pediatric neurologist told us after he had a stroke at birth and suffered brain damage. Vacation is as therapeutic for my boy as his physical, occupational and speech therapy sessions. Released from the demands of medical appointments to enable his body, Max has time to enable his mind and soul. He can explore different surroundings, have adventures (swimming with jellyfish in Florida, taking a jeep ride through the desert in Arizona) and eat his body weight in ice-cream.

To be sure, Max’s cerebral palsy comes on vacation, too, and my husband and I are there to assist him with life skills, massage his muscles, cope with the occasional sensory meltdown if a place we’re at is very crowded and navigate unfamiliar terrain that can trip him up. Depending on where we’re going, I may have to call ahead of time to see if a teen program will accommodate Max. Sometimes we have to deal with unaccommodating places, which is always maddening.

Yet even when we’re just going on an overnight trip to the beach or to a friend’s home, we are free.

On vacation, we feel typical. Vacation is the great equalizer for families of children with disabilities; like any other family, we wake up whenever, roam randomly around, check out local restaurants and quibble over what to do next. My children are just like any children having adventures, splashing around in the pool and generally loving life.

-Ellen Seidman, Love That Max

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One of the hardest days of my life as a NICU parent was not what I would have expected it to be. It was the day I went home without my baby, after spending every waking moment since my emergency C-section by his incubator. I never knew I had a dream about what it would be like to have a baby until that dream was taken away.

As we finally drove away from the hospital, four long days after the birth of our child, I remember thinking, “NO, NO, NO! This is not happening! I am not supposed to have empty arms! I am supposed to have my baby in the back seat and be able to put him to sleep in his nursery, nurse him and show everyone how perfectly beautiful he is.”

This wouldn’t be the last time I would have that thought over the next three months in our NICU journey. But I was lucky enough to have an amazing team of doctors and social workers, who recognized that I would be suffering from terrible anxiety in the NICU and afterwards. They saw me struggle and go blank when I looked at the brain bleed on my baby’s head ultrasound. They gently but firmly scheduled a meeting with a physician specializing in the mental health of expecting and new mothers. They made sure I showed up for it.

At first, all I could do was live with the burning anxiety in my chest, that if I ever left my baby’s bedside, if I ever slept, if I ever stopped paying attention, something terrible would happen.  And if I closed my eyes and tried to sleep, dreams of white and grey destruction visible on the brain imaging would haunt me. The difference between awake and asleep was blurred by constant fear. The physician treated me for post-traumatic stress disorder (PTSD), and with time, counseling and medication, the NICU and my own mind stopped being places of torture.

Over time, something else extraordinary happened.

My old ideas about having a baby were replaced by even more wonderful ones: I dreamt of my scrawny, saggy-bottom fuzz ball of a son growing strong in his own way, leaving the NICU, and meeting every challenge life would throw at him with his family by his side. And I held my baby boy close to my heart, now convinced that this was NOT going to be a catastrophe, and we WOULD heal together.

I don’t want to minimize how awful it is to have a child in the NICU, or how terrible PTSD is. But, I will say that sometimes, for some people, laughing at tragedy makes it easier to handle. And that is what we did as a family.

So in the spirit of finding something real and positive even in the NICU, when you’ve just gone through utter terror and chaos, here is my list of the top 5 reasons NOT to hate the NICU.

5: You have a reason not to look like a celebrity after giving birth. No one expects you to wear anything but a hospital gown, ratty slippers and a frown of pain in the NICU for the first week or so. You might even start a new trend.

4: You should be eating a lot of nutritious food so that you can make breast milk, which is the most powerful medicine for your NICU baby.  The best part is that you’ll lose weight even after eating all those French fries dipped in a vanilla milkshake! (It sounds gross, but try it.)

3: Your baby may have 2 birthdays, the day he or she was born and your due date. That means two official reasons every year to celebrate your wonderful child, although it also means twice the cleanup.

2: You will never ever have a babysitter like a NICU nurse. These nurses are calming angels of caring and advocacy who demonstrate the utmost responsibility, competence and intelligence. After that, you can look forward to hormone-charged, barely-legal-to-drive teenagers as babysitters.

1: You have a baby, an amazing, incredible creature who will change you forever.

So, get help if you have PTSD, make new dreams for yourself and your family, and if you have time, share your reasons to NOT hate the NICU with me.

Start listening to the album!

When my son Maceo was born, there was no breath in his body. He was grey and shaking and my doctor looked mystified.“What’s happening?” I asked. “I don’t know,” he said gravely, his voice trailing off. After an ideal pregnancy and a short labor, my son had gotten hurt on his way into the world. We spent two months in NICU, which is the Neonatal Intensive Care Unit for the uninitiated. The doctors were dire in their predictions. Maceo had suffered a brain injury due to a lack of oxygen leaving him with the immediate diagnosis of Hypoxic Ischemic Encephalopathy, which eventually resulted in diagnoses of Cerebral Palsy, Chronic Lung Disease, Swallowing Disorder and Cortical Visual Impairment.Today Maceo is a vibrant, music loving nine-year old who is learning to use a head mouse with his communication device and lights up a room with his smile.

Back then, we didn’t know any of this and we didn’t understand what was going on. The doctors took us into a dark room and keep saying “It’s bad. It’s very bad.” Finally we said “Ok! We know it’s bad. What can we do?” They said “It’s very bad, every area of his life could be affected but you can get Regional Center services and someone will come to your house and watch him so you can go out to dinner once a month.” We were like, “Huh?” We were stunned, confused and also angry at the lack of constructive communication from the medical professionals were dealing with. They looked at us like we were absolutely crazy as we expressed our love, our hope for our boy and our endless questions about what we could do to help him. We switched hospitals, cleared all pessimists and naysayers from our team and sought out professionals who corroborated our hope. The first two years were arduous as we tried to figure out how to take care of our guy. There was medical equipment, a suction machine, pulse oximeter, food pump, g-tube, in-home nursing, therapies, sometimes 3 a day and sometimes 90 minutes away. We had a hyperbaric oxygen chamber kindly donated to us and we built a crawling track for him to move down hoping to organize left and right sides of his brain.

All of that said, even back then, we have always had a lot of fun at our house! Challenges notwithstanding, for both my husband Joe and I, life is infinitely better since Maceo came along. He is persistent, funny and loves music more than anyone I’ve ever met. I am a musician and my husband a passionate music lover so there is always music playing in our house. When he was a baby, Maceo’s body used to be very tight, wound up like an infant-sized coil of wire. Due to the dystonia in his body from his brain injury, his main physical expression when uncomfortable which seemed to be most of the time, was arching back and turning his head to the side. In those days we used to roll him from side to side on his back, pushing one knee up to his belly and rolling him over then back to center and then the other knee up and rolling to the other side. This was the one thing that eased his discomfort, getting him out of extension and relaxing his body. And then one day, sitting at the computer with my husband Joe, something else happened. Joe put on “Human Nature” by Michael Jackson and Maceo transformed. Right as the first couple of notes of the opening riff played, his eyes opened very wide, he turned toward the screen and every drop of tension left his body. Joe and I looked at each other, looked at him and back at each other in amazement. It was like magic. Maceo has been a music fiend ever since and it should be noted, he is THE most opinionated person about music that I’ve ever met.

When Maceo was two I caught up on the phone with a songwriter friend of mine Pete Glenister who lives in London. We had lost touch for a while and he said, “What are you up to these days?” I said, “Well, I’ve got this amazing kid, Maceo.” I told him what we’re working on, sharing some of the ins and outs of our journey and to my great surprise, he said, “That sounds beautiful. I’d like to write songs about that.” “Really?!” I said. He said, “Yes, I think you should share your life in your music and I’d like to do that with you.” It took us six years to write and record A Family Album as Pete lives in London and I live in Los Angeles, and also, you know, life! We started writing over Skype, sending each other ideas back and forth and whenever we had enough songs to finish, I’d head over to Pete’s place and get ‘em done. Eventually, we had a finished album which turned out to be a collection of snapshots of our family, and so we decided to call it A Family Album.

Read our interview with Holly and learn more about the album.

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

My name is Jess Paciello, and I am 21 years old. I guess that makes me a millennial (yikes!), but I am not too fond of millennial culture. Anyone that knows me knows that I love my quiet time alone (you can probably find me binging on Netflix), casual wine nights IN, I am so terrified of setting foot in clubs or big bar scenes, I have strong negative views of “hook up” culture, and I would just prefer to fly way under the radar. I do want to talk about dating with disabilities though, because I believe that this topic is super important. Why? Discussing dating with disabilities is important, because often society views the disabled population as inferior and almost non-existent. According to society, disabled people are undesirable and therefore can never be “dating” or partner material. This absurd idea is completely false.  As someone with cerebral palsy myself, I think I hopefully can try to tackle this subject with some first hand experience!

First off, coming from a female’s perspective: dating is hard in 2016, regardless of whether or not you are disabled. But, disabled people face more negative experiences in “first-time” dating, and that can totally ruin the outlook of hope that you had before. I cannot, and I am not trying to, speak for every disabled person in my age range, but upon talking with my friends I am making a general consensus that it is fair to say we’ve all been significantly discouraged or disappointed when we started to put ourselves out there.

It personally took me a long time to admit to myself that I had CP, and then accept my body for all that it is. One of the biggest pieces of advices I can give to those of you who want to begin dating is please make sure you are ready to! I was one of those people who rushed it in the beginning, and that did not end in my favor. Be confident in all of the kinks and quirks your body has, because if you do not accept them, it’s a very safe bet that your partner won’t either.  I have been lucky and I am incredibly grateful for that; every guy who I have dated has been so gracious when I told them about cerebral palsy, and what that means for how my body functions, and they all have said that CP is really a non-issue for them. It funny thinking about how I was treated, because I am now reflecting on the fact that there may have been some level of self-sabotage on my end which ultimately led to some dating demise.   Again, gaining confidence in yourself is incredibly important here! I have been working on building my self-confidence for a long time now, and I am finally in a good place, so I promise you it can happen!

So… what happens when you are ready to date because you are confident in yourself and your self worth? Those of us with disabilities have a little extra step to tackle with our partners. Disability disclosure. This is a tough topic to give advice on, because it really is so subjective for each individual.  The first time I was disclosing to my boyfriend at the time was one of the most nerve-wracking things I have even done. Again, self-sabotage kicked in for me. I had created all of these fictitious scenarios in my mind that just screamed ideas like: “ you won’t be accepted anymore”, “he won’t accept your CP and you won’t feel safe”, “he could do so much better” and the list when on and on at the time! Another important aspect of disclosure is listening to your partner. If they have questions about your disability, answer them as truthfully as you can. Dating is not a one-way avenue. Support your partner as much as they are supporting you. I promise that disability does not become the be-all or end-all of a relationship if your connection is genuine. Allow your partner to get to know you as a whole, and not just by what you physically can or cannot do. Dating somebody will not last very long if you have no common interests

Luckily, like I previously stated, he was more accepting than I imagined and I was totally in the wrong. Disclosure leads to stronger bonds being formed, and I will say to anyone: if you do not feel comfortable disclosing your disability to your partner, they may not be the Prince (or Princess) Charming. There is nothing wrong with you if a disclosure process goes awry! I know this piece is intended for young adults with disabilities, but I would like to take a second to appeal to parents of disabled children here, too. It will be frustrating to see your child struggle in the dating world if it happens, but you need to allow personal growth at this crucial time of development in teenager years also.  Please allow your child to discover themselves, even if that leads to dating disappointments.  If anything, I really think it helps establish high standards which you all so deserve. Do not settle for dates. Anyone who is worthy of your companionship will accept you. Do not be afraid to put yourself out there.

You may have to “strike out” a few times in the dating scene before you succeed. It happens to the best of us! Remain optimistic no matter the obstacles, and the results you want will manifest quicker than if you wallow in sadness. You are worthy of intimate connections, despite what society says about those of us with disabilities.

Springtime in our neighborhood seems like a Disney movie, minus the princesses unless you count us ravishing suburban moms. First the daffodils burst into bloom, then the tulips. The grass turns from brown to Technicolor green. The birds chirp away and soon poop on our deck. (Oh, wait, not a Disney movie.)

Spring is also the time when I ponder how Max is budding…or isn’t. It’s a moment of reckoning for me, in many ways.

Some people have seasonal allergies. I suffer from seasonal realities.

For one, the children and teens in our neighborhood come out of hibernation. I see how much they’ve matured, and what new things they’re up to. That baby is now talking up a storm. That kid who was a toddler last summer is now zooming along on a kiddie scooter, something Max can’t yet do. The teen boys bounce en masse on a trampoline, which Max couldn’t handle without me holding his hands (the last thing any teen boy would want).

I’m mostly at the point in my life when I no longer compare Max to his peers, something I did compulsively when he was young. It did neither of us any good. But the explosion of progress I notice every spring is an annual shock to my system.

In general, Max’s physical gains are coming more slowly now. Although he is capable of walking stairs upright, he still prefers to clamber up on his hands and knees. He hasn’t made notable fine-motor skill advances. In fact, one of his OTs recently told me that she didn’t feel there was much more she could do to help him, and is recommending we do an intensive neurosensorimotor reflex integration program instead of seeing her.

This spring brought the added challenge of a high-school search. I tried and tried to find a public school with an integrated program. Max has thrived in a school for students with special needs all these years, but I thought a population with a variety of abilities would best prepare him for the real world. He got flat-out turned away from one school that said they couldn’t accommodate him academically (yes, that’s legal) and there were no other programs that fit his needs. I had to come to terms with that. He’ll be heading to an excellent school for students with disabilities but still I felt like I failed him.

Max’s IEP happens in spring, too. As any parent of a child with disabilities knows, this can be a sobering process on many levels, especially because you are forced to confront the “nots”: “Max does not use complete sentences to identify the main idea in a book…. Max does not cognitively think through the problem to check his answer…. Max does not write or verbally initiate writing creative pieces such as a nonfiction story.”

I hate the nots. Forget you, nots.

But I can’t.

Each year, as enchantment unfolds outside, I’m going through inner turmoil about my beloved boy and his future.

Ah, spring.

Replanting the positives helps my perspective. That’s something I’ve learned over the years. While I recently sorted through the shirts, shorts and swimsuits Max has outgrown, I considered some other growth spurts he’s had this year. He went to a prom; learned to program my phone calendar (and scheduled a visit to Disney World); started to appreciate Saturday Night Live (thanks, Alec Baldwin!); and wheeled his baby brother around in a stroller on his own. He even walked across The Brooklyn Bridge, a feat that once again made me think: If only those gloom-and-doom NICU doctors could see him now.

Standing in Max’s room, the pangs of gratitude and sadness and anxiety all swirl together, an emo mix as familiar as the scent of new grass on our lawn.

-Ellen Seidman, Love That Max