At the age of 17 years old, I learned that imitation was not the sincerest form of flattery. I was born with cerebral palsy, a neuromuscular disorder that impairs the coordination of my muscles. My physical disability led me to find comfort in sitting in front of the TV, where I escaped the pain of my spastic muscles by immersing myself in the images and storylines of beloved characters. Those hours distracted me from the reality of struggling with cerebral palsy, but television’s ability to distract me ultimately wore off. While I turned to television as a means of escaping my physical difference, what I really wanted was to be acknowledged on the screen, to see someone like me represented as an ordinary person. 

Able-bodied comedienne Heather McDonald walked out to a microphone wearing a curly bob, high waisted jeans, brown suspenders, and a flannel shirt—all to perform as Geri Jewell. With writhing shoulders, stiff spastic hands, and an exaggerated grimace with a wide roaming mouth, McDonald imitated Jewell’s athetoid speech: “Hey Everybody, I’d like to announce that I’m out of the closet.” McDonald cheekily smiled, cocked her head, and purposefully enunciated: “Actually I was never a lipstick lesbian because I couldn’t put it on straight.” She then mimicked the act of putting on lipstick with a wide movement of the arm followed by a grin. “What can I say, when you’re gay you’re gay,” McDonald claimed with a shrug of the shoulders and stiff hands at her sides. Before the clip ended, actress Fortune Feimster appeared as the girlfriend: “Honey, I am so proud of you,” she said and grabbed McDonald for an exaggerated sloppy kiss—due to McDonald’s performed lack of balance and coordination. Feimster can be heard saying, “steady, steady” as the camera zooms in on both actresses slapping tongues while a laugh track played in the background. 

I blinked at the television set feeling as though a wave had hit me. Dread washed over me, my head felt heavy. Why is having a physical disability a joke? Is this how people see a person with cerebral palsy? Was I a joke? 

I was acutely aware of my physical difference at a very young age. As the first child with cerebral palsy to attend a private French school in New York City, I was approached by the school principal about my orthopedic braces being in violation of the dress code. Despite my physical difference, I was expected to conform to an identity I did not fit and could not relate to, that of an able-bodied person. At the same time, I was also an outsider in my community, unaware at that age of the world of physical disability outside of my personal experience. 

At the time when I first saw this particular Chelsea Lately episode I didn’t know of Geri Jewell, but the actress is a pioneer in disability representation. Jewell was the first person with cerebral palsy to act in a prime-time television series. Though Jewell had a minor role in the NBC series as Blair’s cousin, her performance was groundbreaking. Jewell’s character brought new depth to 1980s media. She utilized humor to address an ableist society’s discomfort at the presence of someone with a physical disability.  

Something changed within me that day in my childhood bedroom, as I watched Chelsea Lately. It was then that I developed an awareness that my identity as a disabled individual would not be treated with respect and authenticity. It was in the name of comedy that Chelsea Handler chose to have actress Heather McDonald imitate Geri Jewell, but this was much more than just playing pretend for laughs. 

In discussing Hollywood’s diversity issue of having able-bodied actors play people with disabilities, Huffington Post journalist Wendy Lu claims,  “Disability is an identity just like race, gender and sexuality.” The Chelsea Lately episode’s mocking of the disabled identity is akin to the practice of blackface. Just as white performers have played characters that dehumanized African Americans, McDonald’s portrayal of cerebral palsy demeaned and disrespected the disabled community. Long after the clip ended, I remember deep discomfort weighing me down on my twin bed. The seeds of embarrassment and self-hatred had been planted.  

Media plays such an important role in our lives. As much as it helps us make sense of ourselves and the world around us, it can also be damaging to the disabled community. Even though that episode aired in 2011, Hollywood still struggles in accepting disability as worthy storytelling. 

The experience of watching that particular Chelsea Lately episode will forever be etched in my memory. I will never forget the disorienting experience of being falsely represented on TV; it felt like tripping and falling, being crumpled on the ground after my body betrays me. The betrayer in this instance though wasn’t my disability, but mainstream media’s discomfort with the disabled body. 

In time, my understanding of this discomfort has lit a fire within me and led me to represent myself on my own terms. But I will not stop there. I am more than the images mainstream media imposes on me. I am an advocate for my disabled identity, and do not want other young people to have to endure what I did on that day nine years ago. 

We know that many of our community members are feeling a little bit pent up lately. It's really hard to quarantine, especially as the weather grows nicer. So today we're offering Kathryn Jenkins reading her wonderful book The Inclusion Alphabet for you and your families. This is a book for all ages and abilities, and as Kathryn explains in this video, there are different ways to read it depending on your wishes and needs. 

Follow @inclusion_project on Instagram to learn more about Kathryn's work, and stay tuned for more collaborations between Different & Able and the Inclusion Project! 

Editor's Note: We are working on adding closed captioning to all our videos, and hope to accomplish this in the next few weeks. If you would like a transcript of this video before then, please contact espampinato@differentandable.org. 

“Your child has the physical skills of a newborn,” is never something a parent of a 1 year old wants to hear.

Given our daughter’s many diagnoses, it perhaps would have been justifiable to give up and accept what many of the experts were describing as a life of limits. A life of can’ts. However, in our case, with a lot of work and determination from many people, 12 years later, our daughter has become a rhythmic gymnast and a dancer. Erin’s current reality would not be possible if we had accepted her original prognosis.

Erin was born 8 weeks early with Down syndrome and just about every physical complication that could come with it. She had 3 major surgeries in her first 6 months and spent almost half of her first year in the hospital. When she was cleared for Early Intervention at 6 months, we began working with Developmental, Speech, Occupational, Physical, Music, and Swim therapists along with a nutritionist. She also took a weekly inclusive music class.  We immersed ourselves in Signing Time videos, and Erin had an age appropriate vocabulary—with sign language being her first language. She used an NG tube for the first 11 months of her life. She and her team worked hard. Her siblings were also expert play therapists and creatively included Erin in every activity they could. Shortly before her third birthday, Erin transitioned to the school based Early Childhood program, and a hospital based Physical Therapy program, using a walker and crawling. She was able to first walk in swim therapy with the buoyancy support.  One week after having ear tube surgery and with a candy reward system her sister devised, Erin walked for the first time on Halloween, just before her third birthday.

Sometimes the most amazing things become life changing break throughs. Looking back, we had two of those break throughs. Erin’s Aunt and Uncle sent her a rhythmic ribbon for Christmas. Nothing fancy, but Erin would play with the ribbon for hours. She would put the song, “Let it Go,” on repeat and dance and dance. I began searching for opportunities to develop this interest and found that Special Olympics offered rhythmic gymnastics. With the help of her PT at the time and her sister the dancer, Erin began applying all she learned into an athletic framework. Having mastered crossing the midline at a younger age, we hadn’t worked on it much. That is until her ribbon routine called for a figure 8. What her sister and I thought would be easy became a complex motor planning exercise months in the making. The advantage of the Rhythmic Gymnastics framework was that, while therapy isolated and made it difficult to attend extracurricular activities, a recreational based model provided socialization, confidence building, and added a skill development. She moved from being a patient to a performer. She then became involved with Unified Sports, which is an inclusive model, gaining peer modeling and socialization. This transition to a recreational based program gave her a chance to perform with her friends at a Special Olympics Gala. Her years of PT work allowed her to overcome her physical challenges and use her grace and strength to show others the possibilities.

The second break through for us came when a service dog named Cassie joined our family. At the time, Erin was using her hard-earned physical therapy work to elope. Cassie would alert us if Erin was headed out the door. Erin really did not appreciate the sensory overload of having a dog bark at her and stopped eloping within 3 or 4 months. We also trained Cassie to track Erin. This gave us great comfort and playing hide and seek with a dog was a wonderful activity for Erin and her friends. Erin also helped train Cassie, which provided fabulous leadership and speech opportunities. Cassie was a great reinforcer of ending consonants, as in “sit,” “down,” and “shake.” Cassie was great support for 9 years, taking us for walks, playing ball, and being a loyal friend. She also taught us about saying goodbye this week, as she passed over the rainbow bridge, Erin insisting she be by her friend’s side, as Cassie has been by Erin’s side all these years.

Our other animal partners have been the horses at the Hanson Center Therapeutic Riding Program. Horse back riding is not only good for core strengthening, but it provides a valuable connection to a beautiful creature.

To continue our transition from medical based PT to life-long recreational based exercise, we have begun working with Angela Rodriguez, owner of Kines Training and Coaching. As Angela says, “Exercise gives you confidence, makes you strong mentally and physically, makes you self-sufficient, and helps you handle every day life.” These are things I strive for myself and wish for all of my children. They are also key for achieving joy regardless of ability. Erin is currently working on yoga with Angela, improving balance and strength. The two and Erin’s sister are also working on breathing to help with focus. “Breathing brings back the focus and supports regrouping and changing your reaction,” Angela said.

Life-long fitness is much more effective when people find and do what they love. For children with special needs, doing this may require a medically-based therapy program to develop skills and strength needed to move into recreational-based programs. Therapists working with Special Olympics and other programs can help their patients continue to receive benefits long after treatment has finished.

“Repeat after me: newspaper, rose, hamburger”.

No response.

“Ms. Smith, repeat after me, newspaper, rose, hamburger”.

No response.

The clinician looked at 22-year-old me and said, “Ms. Smith has progressive Multiple Sclerosis – this is a very severe case.”   This was my last day at my clinical placement, it was all too much for me to handle.

I was diagnosed with Multiple Sclerosis in 2012; I was 22 at the time.  They were not sure what was wrong with me at first.  I was a frail, 20-something college student, following a strict “vegan diet” to cover up underlying issues with food and chain smoking American Spirits – I was the poster child for malnourishment and ill health. But my symptoms had suddenly become much more serious than just poor general health.  My symptoms consisted of going blind in my right eye when overheated, stressed, working out, eating soup, drinking coffee, sitting in fluorescent lights, smoking, drinking, sitting in class, putting on eyeliner – okay, I was basically blind all the time! For a long time though, I hid my symptoms. I would tell my friends, “It’s getting better!”

I went through a year of tests – spinal taps, blood work, MRIs, you name it.  My mother has had Multiple Sclerosis since 1998 and with my family history and the nerve damage in my right eye, the doctors wanted to be thorough.  One hospital discharged me and told me to take vitamins. After a year of multiple hospitals, cities, and doctors, I was diagnosed.  Multiple Sclerosis, according to the National Multiple Sclerosis Society, is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and the body.  No, I wasn’t going to die – but it sure felt like that sometimes.

I was a Speech-Language Pathology undergraduate student at the time and my final placement was at a rehab center in Brooklyn.  I could tell my professors were nervous about sending me there after hearing of my recent diagnosis, but I felt positive about the placement; after all, I had been living with my mother having this disabling disease my whole life.  I even wrote in one of my papers that I wanted to work with adults with neurogenic disorders.  At the time, I don’t think I realized how much this placement would affect me.  One client I met had progressive Multiple Sclerosis, and her mind was gone.  No responses.  No eye contact.  No “connection” to her verbal language.  The clinician explained that they saw her decline and watched this disease take everything she had to offer. I was a good student. Straight A’s, always punctual, engaging and communicative.  I stopped going.  This was my final year of school, and I just gave up.  It was too much.  Luckily, Marymount Manhattan College has wonderful and empathetic professors who understood what I was going through and changed my placement to a preschool. I will forever be thankful for that.

Now that I’m in graduate school, I look back on those moments of weakness in the first months of my diagnosis. I am now, a completely different person.  My Multiple Sclerosis has changed me, and for lack of a better term, for the better.

I left New York City in 2014 to move to Philadelphia.  Philadelphia was closer to my parents and had cheaper rent.  I had always an interest in nutrition, hence my vegan diet at such a young age, and I started learning how to take care of myself through nutrition.  I started accepting that my condition was incurable, and I needed to handle it.  I chose to stop taking my disease-modifying drugs, which left bruises all over my body, and manage this disease in a more holistic fashion.  I kept up with my vegan diet, but incorporated more whole, plant based foods.  I started juicing, eating raw foods, and exercising daily.  Now, by no means, am I perfect at this point.  This has been a journey and quite the process.  In early 2015, I met my future husband, and we moved to Colorado a year later.  Still eating whole foods and managing my Multiple Sclerosis naturally – I remained symptom free. I started my graduate degree in Speech Pathology, and my Multiple Sclerosis was nowhere to be found.  I felt like I healed myself.  I wrote a blog and gave diet and exercise advice to everyone who asked (and people who didn’t ask).

And then, in 2017, I forgot how to walk for the first time.  After a year of a vigorous running schedule, graduate school and a miscarriage, my body said no more. My diet was good, but it wasn’t great.  As cliché as this sounds, life happens.  Things take the back burner – things that shouldn’t.  At the time, I was off disease modifying drugs for 3 years with no symptoms. I became lax.  I had too many glasses of wine some nights, and living back in Philadelphia, too many vegan cheesesteaks.  Just when I thought I was done with this disease, I was right back where I had started – in that god awful tube for another MRI.  My legs were weak and shaky and I had no feeling in the left side of my body. Once again, Multiple Sclerosis wasn’t going to kill me, but it sure felt like that.

I have a lot of flaws and a lot of things I do not like about myself.  But there is one thing that I’m pretty amazing at: I don’t take no for an answer.  Multiple Sclerosis has taught me that.  I can barely walk? Nope, not happening.  I took it to another level.  I stopped running, even as much as I loved it; I felt that it was too much on my central nervous system.  I started doing yoga instead – and practicing meditation. I stopped drinking – it didn’t do anything for my body. I began asking myself a question every day when waking up – what can I do for my body and my health today? What is the best for Monica? I continued eating a whole food, plant based diet and started eating 9-10 cups of raw leafy greens a day. I also began supplementing with vitamin D, which is great for people with Multiple Sclerosis.  

When asked to tell my story I find myself thinking – well what part?  Do you want to know about the 22-year-old that couldn’t handle her clinical placement due to an unfortunate diagnosis, who you could find on East 90th street chain-smoking?  Do you want to know about my years of healing where I became a spokeswoman for healing multiple sclerosis and then miserably failed by losing my ability to walk? Do you want to know about my current diet and how I overcame failure?  Ask me for my story in a year, and it will be longer. There will be more successes along with hardships.  With or without an unfortunate diagnosis, life goes on. Our story lengthens as we grow as individuals.

Repeat after me, “hamburger, rose, newspaper.”

Today, I can repeat.  And that’s all that matters.

Since the age of two, when I incurred a spinal cord injury, I have used a wheelchair. One of the most complex parts of living with a disability is handling the way the rest of the world receives you.  I am a super observant person and feel like often I am met with people being unsure of how to move, communicate, or simply coexist with me.  This has led me to a concept that I’ve integrated into my life called, “Hosting Your Own Party.” What I mean by this is that you have the opportunity to either lead or to host situations which might be totally awkward, and turn them into light and controlled moments. How do you do that? First, you must remember that you know yourself and your disability better than anyone! So, below are the steps on how to Host Your Own Party:

1. Look the Person in the Eye and Greet Them:  People will often rush to one of two things: help or get out of the way.  I think reminding others that there’s no rush and that everything is under control is helpful.  We’re all human beings and no one’s going to bite… yet!

2. Be Clear and Precise: Whether you need help or assistance with something, or do not want help (for example getting in and out of an Uber), I’ve found that clear communication has been my best friend.  For example: I say, “I do not need help getting in the car.  I just need help with my wheelchair.”  Now, a lot of people don’t hear you or believe you, and rush to help you regardless.  This is your moment to stop and remind them that you’re the host, this is your party, and they’re not going to grab the reins on this one!

3. Be a Coach: I was lucky and grew up with a coach for a Dad. I’ve found a lot of success in offering positive reinforcement when dealing with someone who seems nervous around me.  For example - back to getting in and out of an Uber – I’ll tell the driver, when they’ve helped me in the way that I’ve asked, “That’s great. Thank you so much!”  And if they happen to get grabby, and try to help in ways that I haven’t asked for, I’ll tell them simply and clearly, “No, don’t do that. Thank you.”

4. Give Yourself Credit: By taking hold of these situations in your life, you give yourself the confidence to know, “You got this.” It takes practice, and you need to do the reps.  This “hosting your party” thing doesn’t just happen overnight, but over time, being disabled can become really powerful. It can make you realize that you can do anything as long as you’re doing it in your own way.  Give yourself a pat on the back.  You’ve accomplished a task that required another person coming into your party and you’re the one who got them there!

5. It’s Not All About You: One of the secrets of living life with a disability is to give others the opportunity to feel helpful.  Remember that kid in the first grade who was just dying to help the teacher? We all have that little kid inside of us and you’ve given someone that opportunity to reconnect with them.

6. Confidence is Key: Okay, I consider myself a pretty confident person.  I’ve been in a chair since I was two years old and have worked so hard to love and trust myself over the past twenty-eight years. However, there are days when I have to fake it. I choose to fake it because I find that even canned confidence feels better than none at all.

7. Costumes and Treats are Helpful: I respond REALLY well to rewards, always have. It was one of the ways I was taught to push my wheelchair as a four year old: “Ali, if you push to the end of the block, you can have anything in my purse!” my babysitter would say.  When I’ve had a tough day or a tough moment where all these tips that I’ve given haven’t worked, I go to the coffee shop and I get myself a treat. Maybe a brownie….  Even if I didn’t do great, I know I tried my best. “Costumes” in this context means that I like to wear clothes and accessories that make me feel FIERCE.  I need to feel like superwoman sometimes after pushing fifteen blocks, and looking down and seeing my favorite Doc Martens on my feet gives me that boost.

Everyone with a disability has their own style. It’s taken me years to find mine. These are tips that have helped me, and if one of them can give you a hand, I’ll be thrilled, because you deserve it!  Go out and “Host your party” to the fullest, in your own way. You’re kicking butt!!

Love and respect,

Your party planner Ali