A year ago, I wrote in my Forbes column about the decades-long pattern of Pride Month celebrations excluding people with disabilities. The underlying reason why Pride events were (and still are) mostly inaccessible for people with disabilities, both in terms of physical spaces and social acceptance, is that mainstream media and public don’t see them having identities outside of their disabilities. While most of this year’s Pride events have either been canceled or moved online due to COVID-19, we still must recognize and amplify people with disabilities within the LGBTQ+ community.

Sexuality and disability are individually difficult topics and often considered as taboo. Those concepts combined, it is almost an impossible thing to talk about in a mainstream setting. Usually, the “disability community” is characterized as a whole, despite the existence of a broad spectrum of abilities and disabilities. People with disabilities have many other social identities independent from their disability, including sexuality and gender identity. But this gets lost in translation when expressed to the public. Too often, this narrow way of viewing disabilities has grave consequences, such as equal access to reproductive health care. The Cerebral Palsy Foundation is currently revolutionizing healthcare for women with disabilities through our Women’s Health Initiative. A shocking 80% of US doctors graduate medical school without ever having treated women with disabilities, let alone LGBTQ+ people with disabilities, especially trans people with disabilities. There needs to be much more work in creating a more inclusive healthcare system for all people with disabilities, regardless of their sexual orientation or gender expression.

On a societal level, people must re-engineer their perceptions of what types of people are deserving or capable of having different gender expressions than their biological sex and exploring their sexualities. As contemporary disability studies scholars call it, Crip theory recognizes the intersectionality of one’s disability identity with all other identity variables. Robert McRuer published Crip Theory: Cultural Signs of Queerness and Disability in 2006, the first known book that analyzes how the fields of disability studies and gender & sexuality studies intertwine. Although McRuer’s book focuses on queerness, it adapts theories from feminism and African American and Latinx studies to explain the multiple facets there is to the identity of a person with a disability. Furthermore, Crip theory acknowledges the historical exclusion of diverse groups within the disability community as a consequence of internalized oppression within said community.

Recent studies show that LGBTQ+ identifying people are more likely to have a disability than the general population. For example, as shown in this infographic, 40% of bisexual men, 36% of lesbian, and 36% of bisexual women live with disabilities. With a significant portion of the LGBTQ+ community having disabilities, we cannot afford to ignore this considerable intersectionality.

Eli Clare, a genderqueer person with cerebral palsy, is well known within the Crip theory and queer theory studies. Clare lectures all over the United States and Canada at conferences, college campuses, and community events about disability, queer and trans identities, and social justice. In 2002, Clare helped organize the first-ever Queerness and Disability Conference, wherein this keynote speech he said:

“We need more exploration of gender identity and disability. How do the two inform each other? I can feel the sparks fly as disabled trans people are just beginning to find each other. We need to listen more to Deaf culture, to people with psych disabilities, cognitive disability, to young people, and old people. We need not to re-create here in this space, in this budding community, the hierarchies that exist in other disability communities, other queer communities.”

Nearly two decades later, Clare’s words still ring true. In a society where we have become more accepting than ever before of the intersectionality and differentiation of sexual orientation, gender expression, race and ethnicity, body type, and socioeconomic status, the acceptance and inclusion of disability in those conversations still lag. To those in our community who have been feeling isolated and excluded from Pride month and the overall LGBTQ+ community— we see you, we feel you, we hear you. Through the month of June, and all months of the year, CPF strives to amplify the LGBTQ+ voices in our community.

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Blog written by Sarah Kim

Japan, the farthest I’ve traveled to by myself:

My cousin, Reeva, had recently moved to Kyoto, Japan to learn Japanese for a year, and she convinced me to visit her there. I didn’t know anyone else living in Japan and Reeva was going to be there short term, so I couldn’t possibly pass up going! I was admittedly pretty nervous about traveling all the way across the world— a 24-hour long plane trip, including a layover— especially to a country that uses a language that isn’t remotely like anything I was used to. But, again, I wasn’t going to miss this once-in-a-lifetime opportunity.

Since I didn’t know how my lightweight, foldable motorized travel chair would do in Kyoto and didn’t want it to break down on me, I didn’t take it with me. Reeva and I found a manual wheelchair rental store that allowed us to rent one for $50/month! Even though I was already walking most of the time, I knew that it would be difficult to explore a large city to the full extent just on foot. Reeva graciously offered to push me in the chair. We are more like sisters than cousins, so I trust her with my life.

Throughout my life, I’ve had adverse experiences with my cerebral palsy being accepted by various Asian cultures, especially from growing up surrounded by Korean people and culture. But, to my pleasant surprise, I found all the Japanese people I encountered in Kyoto to be super welcoming and polite. Even though it is an ancient city, it was much more wheelchair accessible than NYC is; all public transportation and landmark destinations were accessible. This might be because, after World War II and the Korean War, much of Kyoto was demolished, so when they rebuilt it they kept the injured veterans in mind and made most places accessible. Also, the Japanese have high regard and respect for the elderly, so that’s another reason why the accessibility rating is high.

I immediately fell in love with Kyoto. I adored all the mountains and the architecture of the city, and the fact that residents were always quick to lend my cousin and I a hand made the trip even more spectacular. I felt like I was somewhere the polar opposite of NYC. Out of pure coincidence, we met two American brothers who were also visiting the city when we were at breakfast the morning after we arrived, and were able to sync up some of our plans.

There were so many aspects of the trip that I deeply enjoyed, too many to name. I experienced and explored places and things that were exclusively unique to Kyoto… where do I even begin! On the 1st of every month, all the shrines and temples are free of admission to the public, and the visitors honor and pay homage to the city’s deities. We visited the Fushimi Inari Shrine, which is famous for its thousands of red vermillion gates. The gates straddle a network of trails that lead into the wooded forest of the sacred Mount Inari. Foxes are thought to be Inari’s messengers, so there were dozens of fox statues across the shrine grounds.  Reeva and I didn’t walk through all the three-hour-long hikes, but we briefly walked under the red gates and turned back.

I was vegan by the time of the trip, so I couldn’t eat the famous sushi and udon dishes, but I still enjoyed the unique freshness of many vegetable dishes. In the more rural areas of Kyoto, like Arashiyama, the famous bamboo forest dishes tend to be more plant-based.  Arashiyama, the bamboo forest, or grove, was like a whole other world, undoubtedly unlike any other forest in the world. I took turns being pushed in the chair and just walking while going through the path. There was a unique sense of zen and calm in the grove; although there were hundreds of visitors walking the trail too, I became one with nature — such a breathtaking sight and feeling.

It was this Japan trip that made me truly realize that there is so much more of the world that I had yet to experience and see. Writing about my favorite trips through this mini travel series has allowed me to appreciate just my mere ability to travel, and I cannot wait to continue exploring the world when it’s safe to do so. I’ve been quarantined with my boyfriend, who’s originally from Bostwana, Africa, and we’re planning on visiting his family there together sometime in the near future!

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Blog written by Sarah Kim

Welcome to the second part of my travel series! In the previous post, I wrote about how I found my love for traveling through my trip to Madrid and Paris. Looking back, not only do I realize that these trips took place during very different phases of my adult life, but they also mark the different phases of my CP in recent years. Although CP is the result of a non-progressive brain injury, many folks experience a decline in their physical abilities in their adult years — the inevitable effect of aging, not just for those with disabilities, but for everyone.

Well, for me, I’m seeing the peak of my abilities now, in my mid-20s. In college, I started to take my physical fitness and wellness more seriously than I previously had. My goal was to preserve and maintain the abilities I had, but in the process, I saw a significant improvement in my gait and stamina. It was toward the end of my college years that I found myself using my wheelchair less and l felt more comfortable walking. This opened the door to different opportunities for traveling and required fewer logistics to consider.

In a truly inclusive and accessible world, it shouldn’t be the case, but for me, as a person with a physical disability, it is easier to forgo using mobility aids than using them to explore different places and cultures. The world should be accessible to all people regardless of ability, but to this day, not all architects and designers take people with disabilities into account when constructing buildings and landmarks. However, as emphasized in our Accessibility Is Beautiful program, universal design can be incorporated into virtually every aspect of architecture and construction.

All of this is a long-winded way of saying that over the recent years, I realized my privilege of not entirely needing my wheelchair to explore the world, However, I always move in the world with a sense of dual consciousness; even though I can access non-wheelchair-accessible places, I think about the fact that it’s inaccessible and I try to bring awareness to that fact.

Cancun and New Orleans (couldn’t pick one!): 

Although these two trips took place with different people at different times, I group them together because I went to each destination with a long-time childhood friend. Cancun came first. To celebrate my graduation from grad school and being done with school (for now), Emily and I took a 10-day long vacation to Cancun, Mexico. I grew up by the Jersey Shore, but I’ve never seen water so clear and blue like here — you couldn’t distinguish the water from the sky.

This was the college spring break trip that I never got to experience, but it was much better to do it at the end of my higher education career. Having spent the previous ten months trapped inside my school’s building, it was rejuvenating to have unlimited access to the sun and beach. My friend was/is doing a Ph.D. program in molecular biology, so Em was on the same page as me.  We did some exciting and adventurous activities too, like snorkeling to pet sea turtles and going to Xcaret Park to learn about the Mayan culture. Also, surprisingly, as a vegetarian (me) and vegan (Em) at the time, we didn’t have any difficulty finding delicious food options… always a plus!

The NOLA trip was more recent: at the end of last summer. It was with my other childhood friend, Kristen. In recent years, we had developed a tradition of taking a vacation in August: the first year we went to Disneyland, then to Hershey Park, and this time it was New Orleans! We were there for only four days, but we definitely made the most out of it. In the months leading to the trip, I had transitioned out of using my chair into just walking, so this was the third trip I went on without my chair— first to Austin, Texas, then to Tampa, Florida (all in 2019). Kristen has known me for over 10 years, so she was totally used to traveling to all kinds of places with me, and walking to my speed and pace.

As a jazz and history enthusiast, I basked in the rich historic and music culture of NOLA. I loved the fact that there was live music playing on virtually every street corner and that all the buildings and food had hints of Creole. Kristen and I also took a bus trip outside of the city to the plantations, particularly to the Whitney Plantation. It’s one thing to learn about the entrenched history of slavery through books and school lessons, but it’s a whole another level to go actually in person and learn about it in an organic and unfiltered manner.

The COVID-19 pandemic has really forced me to pause and reflect on all the amazing travel experiences I’ve had over the past few years. Reminiscing about these trips makes me even more excited to continue traveling when it’s safe to do so again. The pandemic has also reminded me of how unpredictable and short life is, so that’s more of a reason to seize all the opportunities life has to offer as soon as you can!

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Blog written by Sarah Kim

It would be an understatement to say that the last few weeks have been unprecedentedly difficult. Some of you might feel hopeless, some fearful, and some defeated. However, it’s times like this that we must muster up our strength and forge forward.

One of the most direct ways you can incite change is by voting both in the national and local elections —  this year, especially. Never has there been a time when it was so crucial to amplify our voice than now.

Disabilities intersect all issues at center stage now, from racial disparities to equal access to healthcare, to fair and equal employment opportunities. It is only when we elect the right people into office that we will see change.

The 2018 midterm elections had a recording-breaking voter turnout: 53% of the citizen voting-age population voted, marking the highest midterm turnout in four decades. There were significant increases in voter turnout among minority groups, including Hispanic/Latino and African-American voters.

However, the population that surpassed all other minority populations was people with disabilities, according to a study conducted by the Rutgers University School of Management and Labor Relations. In 2018, 49.3% of people with disabilities voted, about 14.3 million voters, an 8.5% increase from the 2014 midterm elections. An estimated 10.2 million voters live with someone with a disability. Combined, this suggests that 20% of all voters have some connections to disability.

Yet, as we’ve seen in 2016, candidates have worked to appeal to minority voters such as people of color and women, but people with disabilities too often come last in their efforts, if at all. One of the current presidential candidates has set forth a disability policy plan, making him the last one to do so from his party.

If you haven’t already done so, register to vote TODAY! Online voter registration is available in 39 states including the District of Columbia. You can also register by downloading the National Mail Voter Registration Form and mailing the completed and signed application to the location listed for your state.

Amid the COVID-19 pandemic, you might not feel safe voting in person, especially if you are in one of the vulnerable populations for the virus. To ensure that your vote gets counted, be proactive about requesting an absentee ballot. Since there will most likely be a surge in mail-in votes, consider casting your absentee ballot as early as possible.

The voices of the disability community deserve to be heard, and all voters should be physically able to exercise their right to vote. From the Presidential elections to school board elections, getting out the vote is the best way to voice your opinion on the most important issues to you.

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Blog written by Sarah Kim

My boyfriend and I had planned a beach vacation for mid-March a month in advance. We were still determined to go on the trip even as COVID-19 was trickling into America. At that time, the virus was relatively new, and no one seemed to know how it affected people, and if it only targeted those with preexisting conditions and the elderly. So, thinking that we were invincible, we packed our suitcases and hoped for the best.

In the 48 hours before the flight, things started to change at the speed of light. The number of cases of the coronavirus across the county increased exponentially, and the White House issued travel bans against a number of European and Asian countries. The turning point for me and my boyfriend was when New York’s Governor Cuomo issued a mandatory shelter-in-place order. It was then that we (heartbreakingly) finally canceled the trip.

The beach vacation was only one of the dozen trips I had planned for this year. It was on my bucket list to visit two more states before my 25th birthday so that I would have been to 25 U.S. states before age 25. My birthday has come and gone during quarantine, and I still haven’t visited those states.

Developing my love for travel:

Growing up, I never thought I’d be much of a traveler. It was hard enough to navigate through my hometown in New Jersey with cerebral palsy, so I could only imagine how hard it would be to navigate through different states and countries. My family and I would go on annual trips, but I relied on my parents for transportation and pushing me in my wheelchair (at that time, I used a heavy power chair, which we couldn’t easily transport in the car, so I used a manual wheelchair for trips.)

It was only when I went away for college in New York City that my wanderlust started to kick in. For the first time in my life, I was living and exploring a completely different place than the one I grew up in, all by myself. The city is far from being the most accessible place to live, but, as the saying goes, when there’s a will, there’s a way.

At the end of my freshman year, I invested in purchasing a lightweight, foldable motorized wheelchair. The chair opened a door of unlimited possibilities in terms of all the places I could go since it fit into any car truck, bus luggage bay, and airplane cargo hold. That summer, I frequently took trips to and from the city and my parents’ house in New Jersey. Every summer after that, I’d stay in the city for internships and traveled to different cities, like Philly, D.C., Hartford, and Boston, to visit friends on weekends.

In the three years that I’ve been out of college, my thirst for traveling has only grown bigger. Two months is the longest I’d go without escaping New York and as we are approaching three months since quarantine began— and six months since my last trip— I’m feeling a bit haywire.  I know that I’m definitely not the only one. No one knows when it’ll be okay to travel and go on flights again. In the meantime, we are all daydreaming about our next trip and revisiting past ones.

This— mid to end of May— is normally the time when I plan and book all of my getaways for the summer. That is not happening this year. Instead, I’ll travel down memory lane of all the new places I explored in recent years and eagerly wait until my next one, whenever that might be. In the next couple of blog posts, I’ll write about some of my favorite trips that I took over the years.

My first solo international travel:

Ironically, my first time flying alone was on an international flight to Madrid. It was my junior year’s winter break and my friend from college and her family had invited me to visit them in Spain. The friend (whom I, unfortunately, parted ways with after college) and I met our freshman year and we immediately became like two peas in a pod. We always talked about me visiting her hometown in Spain, but that felt like a distant dream; I was just getting used to living 50 miles from home, so being 3,580 miles away seemed a bit daunting.

However, over the 2.5 years, this friend became an expert at accommodating my needs— namely putting my travel chair in and out of car trucks and helping me troubleshoot the chair when it malfunctioned— as if it was second nature to her. After witnessing me travel through some of the most inaccessible parts of the city with my wheelchair, she believed I could take on Spain.  When her parents invited me to come, it felt like a once-in-a-lifetime opportunity that I couldn’t pass up. It took a bit of convincing, but my family finally wrapped their heads around the idea and allowed me to go.

I believe living in NYC toughened me up and made me become street smart. Not only was it my first solo and international flight, but it was also the first time I brought my travel chair onto a plane. After researching, I found out it was safe for the chair to go in the plane’s cargo hold, and it had the right type of battery that was allowed inflight. Admittedly, I butted heads with the TSA and airport personnel; it seemed like they had little to no experience accommodating passengers traveling with this type of chair. It’s a good thing that I did my research because I could reiterate my rights to them and have the chair stored with the baby strollers beneath the plane.

It’s really helpful that they let passengers with disabilities board the aircraft first, allowing me to take my time walking to my seat. I’m naturally not a nervous person, so flying in itself was not a concern for me. I had taken long bus trips before, so I convinced myself that it was like that but up in the sky.

It was right after Christmas when I landed in Spain. The seven-hour flight flew by (pun intended) like a breeze since I made sure I slept through most of it so I could adjust to the time difference. It definitely took me a day to realize that I was really in Madrid— it felt like a dream. Forget about a White Christmas, this city has a spark of magic and beauty in itself.

Besides going to South Korea with my family right before college, I had never explored another country outside of North America. I can’t possibly pinpoint one part or aspect as my favorite because I was truly blown away by everything about the city and its culture. But I think that the fact that my friend and her family made me feel welcome and accommodated my wheelchair, made the whole trip feel even more magical.

I took a keen interest in the leisurely culture of the city — people take siestas in the middle of the workday, and they took time to eat each meal. The streets and buildings were vibrant in bright colors and the people definitely complimented the colors with their genuine kindness and cheerfulness. Although most of Madrid’s buildings and sidewalks are still in their original historic form, it was relatively easy to travel through the city in my wheelchair. As I usually did in NYC, my friend and I would push the chair through uneven grounds with me walking beside it. It was really convenient that the chair only weighed 50 pounds since it was light enough to carry into places when there were no accessible entrances.

Since my friend also had some family in Paris, we took a quick trip — a two-hour flight — to the City of Love. It’s wild how simple and cheap it is to travel within European countries.  It felt unreal to walk on the same streets as some of the most famous writers once had, like Ernest Hemingway, Jean-Paul Sartre, and Simone de Beauvoir, and to sip on a cappuccino at the La Closerie des Lilas cafe. Not to mention the historic landmarks like the Eiffel Tower, Louvre, Arc de Triomphe, and the Notre Dame Cathedral (RIP).

This Europe trip jumpstarted my desire to travel around the world. It was then I finally realized how grand this earth is and how even if I devoted all of my time to traveling, that still wouldn’t be enough time to see all of it. In the coming weeks, I’ll be sharing more of my experiences traveling as a woman with CP. Over the five years since my Madrid/Paris trip, I visited many more places and explored various cultures and ways of life. I cannot wait to share those experiences with you all through this blog.

There are many, many, many more countries and cities I want to visit, and I can’t wait for the pandemic to be over to do so I can start traveling again! It was through trial and error and determination that I realized my cerebral palsy should not and will not prevent me from exploring different cultures and places. Accessible and adaptable travel is what #MakesMayMatter to me and the ability to have a worldly view on pressing issues, like structural and geographical accessibility and universal design.

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Blog written by Sarah Kim

I don’t know if this is just me, but my time in quarantine has made me have weird flashbacks to my childhood. As a kid growing up with CP, especially with a speech impediment and mobility limitations, my lifeline to making and keeping friends was through AIM (AOL Instant Messenger, for those of you who are too young to remember) and one of the first video chatting platforms, ooVoo. Fast forward 15 years, many of us are in a similar situation. To slow the spread of COVID-19, most of life has moved online, including friendships.

In the early 2000s, I’d plant myself in front of the computer screen after school for hours on end. To start the internet, I’d first have to make sure that no one was using the landline since the phone used the same cord as dial-up internet. Once turned on, the little yellow man, AIM’s logo, greeted you by eagerly racing to sign in. AIM offered me a sense of normalcy; behind the computer screen, my speech impediment didn’t matter because communication was via typing on both the receiving and sending ends. In this virtual world, my peers couldn’t see my wheelchair or hear my voice; we all became equal.

It took me so long to realize that my speech impediment wasn’t the issue, but rather the problem lay upon my peer’s lack of patience and fear of anything different. Just like CPF’s “Just Say Hi” in Schools” program aims at, the key to starting a conversation with someone who might look or speak differently from you is, literally, just to say “hi.” Since the whole concept of diversity and inclusion in classrooms had yet to be widely incorporated, the next best thing, during my elementary and middle school years, was to depend on AIM and equivalent online platforms to forge friendships.

Through countless sessions of speech therapy and increased self-esteem, I finally started to use my voice IRL to chat with my friends in high school. In college, I was a social butterfly; I couldn’t get across the campus without running into friends and talking up a storm with them. By then, I was notorious for not answering texts/chats, but once you got a hold of me in person, I’d give you my full attention and talk up a storm.

As an extrovert, I love in-person conversations and meetups. During my first year of being a freelance journalist, I’d mostly work from my apartment or neighborhood. I’ve never been so lonely and sad for such a long period as I had during that year. That was a significant part of the reason I joined The Wing, a co-working space and community for women and non-binary folks. Weeks after joining, I noticed a substantial shift in my mood and motivation. I made new “work” friends, and although we were working on entirely different things for completely different companies/organizations, I genuinely enjoy their presence and our chitchats.

Come 2020, and a global pandemic has moved the majority of our lives into our homes. And I, personally, feel like I’m back at square one. First, I’m back in the same situation as I was at the beginning of my freelance career — isolated and lonely. Second, the fact that I need to depend on technology to chat with friends brings me back to my pre-teen, AIM years. Although advances in technology have made keeping in touch with others more possible than ever before, multiple studies have shown that the use of social media has adverse effects on a person’s wellbeing by increasing feelings of depression and loneliness.

“Zoom fatigue” is spreading like wildfire — since all of our interactions and socializing are happening over Zoom, at a certain point of the week, we can get pretty exhausted from continually having to talk or text all day. Although I love my friends and cared about them dearly, the last thing I want to do after being on the computer and phone all day for work is to have another Zoom call at the end of the day or to stay on my devices to answer more texts and emails.

I know I’m not the only one feeling this way. Although the mantra of quarantine thus far has been, “alone together online,” there’s a limit of how far that sentiment can go. Before the pandemic, you probably didn’t receive a morning call from a relative or scheduled back-to-back hangouts with different groups of friends regularly. But now, those kinds of things have become the new norm.

To prevent myself from sinking into a looming funk, I’ve made an effort to set boundaries for myself and my friends. I schedule my calls with friends in advance so I can make sure they are well-spaced out. I make sure my boyfriend and I spend some quality time together without being on our devices. When I go on my daily walks outside, I put my phone on airplane mode, allowing myself to be alone with my thoughts and myself. When I schedule Zoom calls with friends, I try to add some sort of structure to them, because, let’s be honest, how many times can you talk about “how you are”? A friend and I would cook the same dinner together while on the call, and I would take the same fitness class at the same time as a friend while facetiming each other.

Because everyone is in a similar situation right now, it can be hard to decline a Zoom party or FaceTime call. But you’re not going to be the best friend or conversationalist if you’re ignoring self-care and your own mental wellness. Just like on airplanes before takeoff, the flight attendants remind you to put your oxygen masks on first before helping others, the same sentiment rings true here.

A digital world in 2020 has indeed made it easy to stay connected with our loved ones, especially during a mandatory lockdown in a global pandemic. But too much of anything can, ultimately, be harmful. If your friends truly care about you, they’ll understand if you’re forthright about why you’re unavailable or can’t talk. It’s better for you psychologically rather than to force yourself to get on a call or to come up with a lousy excuse.

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Blog written by Sarah Kim

One of the hardest moments during quarantine for me was when my apartment building announced its gym was closing to prevent the spread of coronavirus. As the outside gyms closed all around the city in the weeks prior, I felt grateful that the one in my building was open. The gym was the lasting lifeline to my sanity, and to have that yanked away from me, I felt lost.

When I was apartment hunting two years ago, the realtor reassured me that although the studio unit was small, it wouldn’t matter that much since I would only come home to sleep, and the building had a bunch of amenities. Undoubtedly, the realtor couldn’t possibly have predicted that a global pandemic would be in our future and would force me to be confined to the 460-square-foot apartment, along with others into similar situations.

To be frank, the thing I feared the most was my physical wellness deteriorating throughout quarantine. Over the past two years, I have transitioned out of using my wheelchair and, instead, walking everywhere. Becoming fully ambulatory has been a goal I’ve had since high school, and I knew it was within my reach. Once I completed graduate school, I had much more time on my hands to exercise more rigorously and to take yoga and barre classes that improved my flexibility and relieved my muscle stiffness.

Although this is not the case for everyone with cerebral palsy, I found that a combination of group fitness classes and routine gym exercises have significantly improved my endurance and posture. While in school, I couldn’t walk more than a mile without tendonitis on my hip flaring up or getting extremely fatigued. Now, a few years later, I was walking an average of five miles a day without pain or exhaustion. I had even locked away my wheelchair in storage.

A month into quarantine, I could already notice a decline in my physical strength. While significantly shifting my daily routine and adjusting to my boyfriend moving in with me, a month had gone by with me doing little to no exercise. By mid-April, even going to the grocery store 0.2 mile away had become taxing. I took this as a wake-up call and decided to start maintaining an at-home exercise routine.

Luckily, spring has finally sprung in NYC for the most part (did anyone see those snow flurries on Mother’s Day weekend?), so going on daily walks/runs is much easier than it was at the start of quarantine. I aim to walk a minimum of 30 minutes outside each day. And if the weather is terrible outside, I go up and down several flights of stairs in my building. Not only do these outdoor activities, while wearing masks and keeping proper social distancing measures, and simple at-home workouts have improved my physical wellness, but also my mental health and work productivity.

As CPF forges forward with our #MakeMayMatter campaign, we want to encourage physical and mental wellness within our community. It is in the spirit of togetherness and unity that we want to inspire each other to maintain good health and positivity. May is also National Physical Fitness Month, and what a better way to start the summer than in good health!

Before you begin an exercise routine you should consult with your healthcare provider. Here are some at-home exercises I’ve found helpful for my muscle tightness and overall wellness.

To start, I’ve bought the following exercise equipment. Some fitness experts have mentioned that using your bodyweight for exercises is sufficient, but there are certain muscle areas I wanted to target. Plus, my spasticity can sometimes interfere with how well I can form certain poses.

* One-inch thick yoga/exercise mat (the extra thickness is much better for my joints)
* 5- and 8-inch neoprene dumbbell weights (the material makes it easier for griping)
* Set of multi-level resistance mini bands
* Set of multi-level resistance (long) bands
* Ankle weights
* Yoga block
* Stretching/yoga band

If purchasing exercise equipment is an issue, then there are plenty of household items you can use as substitutes for weights and stretching bands. For example, you can use jars of pasta sauce as weights. If you’re afraid of not having strong enough grips on the jars to prevent from dropping them, then place them in canvas bags and lift them by using the bag handles. You could also use hardcover books or textbooks as weights.

Additionally, I found out you can do a lot of exercises from barre class using a chair or table as a ballet bar. Luckily, tons of exercise videos are readily available on YouTube and IGTV, so I go to the pages of my favorite fitness studios for inspiration for workout routines.

Obviously, everyone, with or without a disability, has a different range of motion and flexibility as well as overall ability. You may or may not find these exercises helpful, but hopefully, at the very least, they may inspire you to create your own exercise program.

Yoga poses as pre- and post-workout stretches: As much as I’ve tried to be, I’m not a yogi. I’m very much of a high-intensity, fast-paced exercise person. However, I find many yoga poses help stretch my muscles, so I start and end each exercise by doing 5-10 minutes of yoga. My favorite poses to do are:

* Cat/cow
* Downward-facing dog
* Supine twist
* Child’s pose
* Extended puppy pose
* Head-to-knee forward bend
* Extended triangle pose
* Pigeon pose

One good thing about yoga is that there are ways to modify each pose and still get the intended stretch, like using a yoga block for the pigeon pose if you have limited flexibility.

In addition to yoga, since I have tight hamstrings like many people with CP, I like to use the stretching band (or use a resistance band or a rope) to give myself a good hamstring stretch.

I tend to focus on a specific part of my body each time I exercise, but do a full-body workout once a week. For example, here is my workout schedule for a typical week:

* Mondays are “arm days,” when I do bicep and tricep curls, as well as pushups and free-weight rows.

* Tuesdays are “leg days.”  I use my ankle weights to do leg lifts/kicks and resistance bands to do bridges.

* Wednesdays are “core days” with sit-ups, planks, and squats. To increase the intensity of these exercises, I like to use resistance bands and weights.

* Thursdays are my “rest days” and I just take walks and do stretches. I don’t want to overwork my muscles so I let my body recover from the past three days’ worth of work.

* Fridays are my “fun, full-body days.” I make my boyfriend workout with me and we do Zumba or Peloton Boot Camp classes online.

* Saturdays and Sundays are kind of a free-for-all. I usually run errands and do chores around the apartment, so I move around more than I do on a weekday. I’m not particularly concerned about sticking to a routine on the weekends.

Like most things in life, getting started is the hardest part of maintaining an exercise routine. But once you get into a rhythm, you feel less stressed about working out, and it can even become something you look forward to each day! Let’s #MakeMayMatter and #MoveInMay together while still maintaining proper social distancing.

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Blog written by Sarah Kim

Saturdays were special as a kid growing up in Port Washington, New York. Saturdays meant Burger King outings with my grandparents, a great big slice of trade-marked Hershey’s chocolate pie for me and piping hot oatmeal for them. And we can’t forget about the Kids Meal toys. But on this particular Saturday, everything was different – at the tender age of five, I started to notice that certain aspects of my life were just off. Precocious as I was, I was determined to be shown, not told. Who would have guessed that Burger King would be the place where I would have my first existential crisis before I knew what existentialism meant (which took me until my junior year of high school to thoroughly learn the concept of – a special thanks to Fight Club).

While eating my chocolate pie and playing with my Powerpuff Girls toy, I noticed a woman behind us reaching for my grandma’s wallet. My grandparents had just cashed in, what I later realized was their social security check (no, I wasn’t a kid genius), and this woman, this thief, was going to take all of it. I opened my mouth to warn them. What came out was far from a complete sentence, but rather a smattering cacophony of nonsensical sounds. I pulled on grandma’s sweater, screaming for her attention, but she brushed me off, even going so far as to scold me for interrupting her conversation with my grandpa. I pointed; I exclaimed; I wailed. I never knew that something so loud could be so incredibly silent. It is as if I was trapped inside a sound-proofed box. For all it was worth, I should have just saved my breath. Steadfastly ignored, I resigned to just being the only eyewitness to grand larceny.

My grandparents raised me to believe that I was just like everyone else, but it just didn’t add up. In my head, my voice sounded like the voices of the Powerpuff Girls: articulate, clear, and normal (but not as high-pitched as Buttercup). But the perplexed looks on everyone else’s face said otherwise. It was then that I realized that there was a disconnect between my mind and my body. My mouth, tongue, and vocal cords physically couldn’t convey my simplest thoughts. This disconnect between my mind and my tongue, although somewhat fascinating (at least to a five-year-old, who was just finding out her world is not what she thought it was, at all), controlled the way I saw my placement in the world and the way others fitted me in their own worlds, and there existed another disconnection.

Ever since that moment, I became acutely aware of how different I was from my friends and family. I’d like to say that my maturity and comprehension were far more advanced than other kids my age, but this just didn’t make sense to me at all. I then noticed kids were jumping and running in the playroom adjacent to the restaurant, while I was trapped in my stroller, watching them from afar. I tried to get up, but my legs just didn’t receive the signals from my brain to move. Why am I like this? Why am I so different? I just couldn’t wrap my head around any of these speculations, and just continued to cry out of frustration and desperation. On the list of words that I did not know, there were cerebral and palsy. It would be another three years until I even heard of those words, and yet another year to hear them together.

After I had calmed down and stopped crying, I realized that I was different in more ways than just one. Even without a cursory glance, I knew that out of all the kids in the restaurant, I was the only one there without my mom and my dad. Just as Adam and Eve learned to question the world, so did I. I took an enormous bite of reality and walked away, brimming with questions. Sure, I knew my dad was busy with work in the city. But why did I call grandma “mom”? If grandma was dad’s mom, she couldn’t be my “mom” too (I could come to this logical conclusion based on the lesson about family structures I learned in nursery school). And if she was my “mom,” then shouldn’t grandpa be my “dad”?  Who was my mom, and how did I come to exist in this world? If I had a mom, then where in the world was she? I had never felt so confused in my five years of living. The carpet ripped out from underneath me, and to say that I was ill-equipped to handle these revelations was a gross understatement.

But this was but a taste of what was to come. The frustration, confusion, and grief I felt were only going to continue to rehash itself as the years went on. Fast forward thirteen years, I am aware of the nature of my disability, and my vocabulary has vastly prospered (which at the time was filled with trivial SAT words that I’d never use again). Yet again, I found myself on the verge of another existential crisis, but this time, I knew what existentialism meant. When I was sending in documentation to register for accommodations at Barnard’s Office for Disability Services, I saw my mom’s name in print for the first time. Ever. In the pile of documents that were related to my cerebral palsy, was an official report for my mother’s death. The autopsy report stated that Soon Rye Kim suffered from a seizure, which a result of an amniotic fluid embolism during labor.

The doctors failed to perform a timely cesarean section that could have saved both of us – my mother died. I ended up with cerebral palsy as a result of the hypoxia (which I already knew from overhearing my dad explaining to my doctors and teachers over the years). I felt all of the earth’s weight on my shoulders, and my heart began to ache. Soon Rye Kim – it took me eighteen years to find out the name of the woman who brought me into this world. I had asked my dad about my birth mother when I was ten before he married his second wife. But he answered only in silence – I have never seen my dad so solemn, and from that moment on, I understood that my birth mom was not for a topic of discussion in the house. So, I went on eight more years not knowing my identity – soul searching, but answers nowhere to be found. This doesn’t even do justice in explaining how important it was to have the autopsy report in my hands – to know what her name was finally.

I finally felt consolidated. I now know who to grieve for, and to whom I owe my life to. I am finding more of myself whenever that name rings my ear, and now that mystery phantom that had been lingering in my life finally has a name: Soon Rye Kim.

To this day, my life has been a constant unraveling of the truth by small increments. This has taught me that there is truly nothing in life to be taken for granted, not even the basic knowledge like the name of your birth mother. As I move forward in life, I am continuously discovering new things about my mother through rediscovering myself. I owe it to my future children to continue finding information about my mother so that when they ask me where they’re from, I will have answers. I can only hope that one day I will be able to manifest the spirit of my mother that lives within me and to use that energy to nurture my children the way my mother would have if she were still here.

My birthday usually falls a week before Mother’s Day, which makes the connection I have to my birth mother even stronger. I no longer negatively associate my cerebral palsy to her death. Instead, I see the obstacles that I face as her way of teaching me valuable life lessons that no one else could teach me and keeping me grounded on my two left feet.

Not only are Saturdays special, but rather every day is unique, even without Hershey’s chocolate pies and Kid Meal toys. I try to treasure each day like it’s a rare gem – I am here today at the cost of my mother’s life, and I cannot ruin the blessing she has given me.

***
Blog written by Sarah Kim

It’s been a rough few months to say the least. Many people had looked forward to 2020 as a fresh start as it marked the beginning of another decade. But then, the coronavirus spread like a wildfire across the globe and changed every aspect of our lives, from working and learning from home to being physically separated from our loved ones.

It’s times like this that the Cerebral Palsy Foundation is even more intensely reinforcing our commitment to the cerebral palsy community which is why we are kicking off our #MakeMayMatter campaign beginning with #GivingTuesdayNow as a response to the unprecedented need caused by COVID-19.

Our #MakeMayMatter initiative is a month-long positive and supportive effort to highlight all the programs and research we are doing to improve the lives of people with CP and how you can make a difference as well.

Why is this initiative happening now?

For certain groups and populations, such as the elderly or people with disabilities, the impact of COVID-19 is hitting hard.

Cerebral palsy doesn’t just “go away” nor do the challenges that accompany it in the time of a global pandemic. High risk infants still need early detection and intervention, and children and adults still need access to therapies and treatments. Learning may have shifted online, but the need for education is greater than ever.  These are just some of the reasons why CPF is stepping up to meet these challenges and boosting our initiatives and programs to better support our community in this time of great need.

What is CPF working on and why are our programs so important?

The Cerebral Palsy Foundation initiatives provide quality of life improvements and tangible results to those living with cerebral palsy and the greater disability community. For instance, our Early Detection Initiative is leading the way in diagnosing CP in high risk infants earlier than ever so that treatment can begin at the earliest possible moment leading to better long term outcomes.

Initiatives like our Lexus/GiveWith partnership reflects the power of play and mobility for children of all abilities, and our Just Say Hi in the schools program focuses on furthering the inclusion of students with disabilities in schools across the US.

To increase engagement with our community and bring real-time helpful information, we’ve created a new Instagram Live series that will help our community thrive even during these unprecedented times. Whether you are searching for ways to continue occupational/physical therapy at home or struggling to cope with depression or anxiety, we’ve got you! Each week, we bring leading experts from various fields to provide crucial information and resources to our community, which includes our partners from the Women’s Health Initiative.

What your donation and support would mean to CPF and our community?

It’s times like this that we want to remind and reinforce to our community that we are all in this together. We take enormous pride in the work we do, and that would not be possible without the love and support from you all.

People, in general, need to maintain good physical, mental, and emotional well-being. People with disabilities have a hard time maintaining their holistic wellness under normal circumstances, and the current state of the world is making this more difficult.

We are dedicated to supporting our community to help them through the most difficult time we have seen in a very long time.

We can only achieve this through the support and care of our friends and gracious donors. The #MakeMayMatter campaign is a powerful way to come together as a global community and support each other during the good times and the bad.

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Blog written by Sarah Kim

There is insufficient research on adults living with cerebral palsy, (as referenced in my previous blog post on cerebral palsy and adulthood). Although there is a paucity of studies examining mental health in this population, medical researchers have speculated that the rate of depression is three to four times higher in people with disabilities such as CP than it is in the general population.

Although there is a fair amount of research and services available for people with intellectual disability and mental illness—which is often coined, a “dual diagnosis”—there are a very limited number of studies conducted on how a physical disability can affect a person’s mental health.

Because of the multiple intersectional identities of any person, it is very difficult to determine if a mental illness directly relates to the person’s disabilities. Just like I can’t separate my identity as a woman and as an Asian-American from my lived experiences, I also can’t isolate the fact that I have CP from them either. However, it’s not just one aspect of my identity that factors into my mental health, but rather an accumulation of being an Asian-American woman with a disability that has colored my perception of life.

When I was a junior in college, my mental well-being sunk down to an all-time low. I’d never been so unmotivated nor had such a distaste for my mere existence than during that period of my life. But I didn’t “get” it. I didn’t get it because I couldn’t see “it.” I wanted to break one of my limbs just to make the excruciating pain I was feeling into something tangible, something I could put my finger on. I didn’t understand why it was becoming increasingly harder to fall asleep at night despite my exhaustion, but it was impossible to get out of bed in the mornings.

I finally sought help from a mental health professional midway through the school year. And I’d received another diagnosis, the first and only one since my CP diagnosis: clinical depression and generalized anxiety disorder.

My depression and anxiety are, by far, the hardest things I’ve ever had to deal with. They make the obstacles I’ve faced because of my cerebral palsy seem like nothing next to them. That is saying a lot. I’ve been able to overcome obstacles from my physical disability and have kept a strong mindset during the process. However, with my depression and anxiety, only the word, “impossible,” entered my mind, a word that I thought I had eliminated from my vocabulary as a young girl.

The main difference between my diagnosis of cerebral palsy and mental illness is that one is visible while the other is not. A strong mindset had always gotten me through my daily life with CP, but my depression and anxiety affected my mentality, which was the only thing I was conditioned to depend on. Now, since my mental health had been affected, it was a lot harder to see the light at the end of the tunnel.

However, there are some ways that my diagnosis of cerebral palsy and mental health are related. Because my CP does not always give me full control of my body, my anxiety manifests itself as obsessive-compulsive disorder tendencies that make me feel like I have control over some parts of my life. For example, I like to have certain things in my apartment in a certain way, and I obsess over it until it is the way I want it. Another example is that when I was using my wheelchair to navigate NYC, I had to check the status of MTA subway elevators at least five times before I was able to leave home because I was paranoid that I would get stuck on a subway platform with an out-of-service elevator.

It was hard for me to find a mental health professional who understood the nuances of having a physical disability. And I am not the only one who feels like there are not enough therapists who are trained to treat patients like me. Dr. Amy Margolis is a neuropsychologist at Columbia University Medical Center’s Department of Psychiatry. Although her specialty is in assessing and treating patients with learning disabilities and other conditions that interfere with academic performance, she believes, overall, there is a shortage of therapists who are trained to treat patients with disabilities.

Dr. Margolis explains that it is important that people with disabilities also pay attention to their mental well-being: “Oftentimes they are regulated to other therapists — like if you have a speech impediment, you see a speech therapist, if you have a motor impediment, you should go to an occupational therapist or a physical therapist. But no one is paying attention to the emotional aspect of having [a disability].”

The American Psychological Association is well aware of this shortcoming of the industry. “Unfortunately, while psychologists receive extensive training in treating mental health disorders, they rarely receive adequate education or training in disability issues. Few graduate psychology training programs offer disability coursework. This paucity of training is a major barrier to providing effective services to clients with disabilities. Limited training and experience may leave many psychologists unprepared to provide clients with disabilities with professionally and ethically sound services, including the provision of assessments and interventions.”

I am very fortunate that I found the perfect therapist and we’ve been making tremendous progress over the past five years. I’ve learned the importance of maintaining holistic well-being — physical, mental, and spiritual — and each aspect plays an equally important role.

As the stigma towards mental illness continues to lessen in society, I hope the cerebral palsy community along with the overall disability community, will also become cognizant of the psychological wellness of individuals with disabilities. One way to achieve this, specifically within the CP world, is to devote more time and attention to adults with “pediatric” disabilities since all kids eventually grow up.

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Blog written by Sarah Kim

If you are the parent or caretaker of someone with cerebral palsy, then you know how challenging some of the most routine self-care tasks – such as brushing teeth, combing hair, shaving, and more – can be. People living with CP understand the importance of grooming and self-care, but sometimes they are limited in their ability to do it themselves.

Luckily, there are an increasing number of resources available to help with these daily tasks, including assistive gadgets designed to make the activity doable, re-engineered favorites designed from the caregiver’s perspective, and enlisting the help of a professional caregiver to support in these tasks. We’ve partnered with Gillette, who has recently launched the world’s first razor for assisted shaving, to round up some great suggestions that make your grooming routine a little easier – particularly when it comes to shaving and oral hygiene.

Shaving

Many people living with cerebral palsy have difficulty shaving themselves or are not able to shave at all because of trouble grasping, muscle spasms or muscle weakness. Whether the desired look is a trimmed beard, zero facial hair or clean-shaven legs, everyone deserves to look and feel their best regardless of circumstance. With this in mind, Gillette created the TREO razor, the world’s first razor designed specifically to shave someone else.

The Gillette TREO razor is designed to be held the same way a painter would hold a paintbrush, providing control and comfort for both the caregiver and the person receiving the shave. TREO’s single blade features a safety comb designed to prevent nicks and cuts, and prevent clogging. The 3-in-1 razor also has a non-foaming shave gel built into the handle. The gel is clear, so caregivers can see where they have shaved; it also hydrates the hair and lubricates the skin for a comfortable, mess-free shave. Because of the hydrating gel and the open blade design, no water is required when using TREO. This means shaving can be done wherever is most convenient.

Oral Hygiene

Oral health is one of the most important aspects of self-care, for reasons both medical and psychological. Drooling issues, poor coordination and muscular limitations can make tasks like brushing teeth even harder for those with CP. As a result, teeth can be more susceptible to plaque retention, bad breath and associated dental diseases like decay or gingivitis (gum inflammation).

Good oral hygiene can be maintained by brushing thoroughly twice a day with a soft-bristled manual or electric toothbrush and using fluoridated toothpaste. Children with good manual dexterity should be encouraged to brush their own teeth. Parents and caregivers need to assist with thorough brushing at least once a day, particularly when oral-motor dysfunction is present. Clean between teeth regularly using dental floss, ‘flossettes’ or ‘piksters’ to remove plaque from areas that the toothbrush cannot reach.

Luckily, there are toothbrushes on the market like the Benefit™ Toothbrush that can help. If you aren’t familiar, the Bendent is a triple-head, or 3-sided toothbrush, that enables the user to clean three sides simultaneously with one brushing stroke. This is a great replacement toothbrush for those CP patients who can’t twist their arms or wrists easily using a regular toothbrush. There are also products like toothpaste squeezers to simplify the entire tooth-brushing process.

So, if you are caring for a loved one with cerebral palsy, consider integrating these tips into your daily care routine – we believe even small tips can really help make a difference! You can learn more about the Gillette TREO razor at www.Gillette.com/TREO.

As the COVID-19 outbreak continues to sweep through the country, there are increasing orders from local governments for residents to stay at home, unless they’re essential workers. Both professionals and students are relying on Zoom and other video conferencing software to work or learn from the comforts of their home, although such measures, in most cases, were not permitted before the pandemic.

Many people with disabilities have been asking their schools and workplaces to offer these sorts of accommodations for years, only to be denied because such protocols would be “too hard” to implement. We were left feeling ashamed that we needed such arrangements, and we had no other choice but to push our physical and mental capacities to adhere to able-bodies’ standards and expectations, or worse, forgo receiving that education or job position.

In reality, as we have witnessed thus far, implementing work- and learn-from-home policies can occur at a rapid rate, proving that it wasn’t “impossible” or “too hard” after all. Of course, people from all over the world have to adapt to this new way of living. The vast majority of people are benefiting from the accommodations that people with disabilities have been requesting for years. Unfortunately, the mainstream population is focusing merely on how such changes are “flattening the curve” of the coronavirus spread. To date, there hasn’t been a focus in the news media about how these implementations are finally allowing many folks in the disability community to live the way they’ve wanted to for years.

At the beginning of my sophomore year of college, six years ago, I was suffering from a herniated disc, which made it extremely painful to sit or stand. The semester had already started, so I approached the school administration and professors to brainstorm ways I could participate in classes from my dorm room until I had the pain under control. They were quick to give me an ultimatum: I’d have to take medical leave or independently come up with ways to still attend classes in person by keeping my pain at bay. It was a combination of perfectionism and shame that I chose the latter. I was already using a wheelchair at that time, after all, so I could stay in it for 12 hours at a time. However, I’d transfer myself to classroom desks as I’d typically do for my comfort, also to, admittedly, conform with the rest of my peers.

My case was on the milder side, and it was temporary. However, there are thousands of students who persistently battle with pain as a result of being denied accommodations and being forced to adjust to able-bodied norms. They carry the same kind of struggle when entering the job market: employers are reluctant to make accommodations for potential employees with disabilities, and that is a significant part of the reason why disabled adults experience unemployment rates that are two times the national average.

Although the systems that were put in place in response to the pandemic are not perfect, they have proved that drastically shifting working and learning environments is not only possible but also productive to all. Still, the long-lasting benefits of these accommodations to the disabled community remains an afterthought. Although the vast majority of the disability community is benefiting tremendously from this new way of life, there are still many shortcomings, especially for the learning disability and sensory impaired populations. For example, there have been reports from parents that schools are not adhering to their child’s IEPs on online learning practices. Also, video conferencing is not accompanied by closed captioning or ASL interpretations.

More likely than not, companies and schools will return to the pre-pandemic way of living after the virus goes away, leaving employees and students with disabilities to fend for themselves, once again. I would implore the general public to take the lessons from this accessible way of life and implement it as a new inclusive standard of living.

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Blog written by Sarah Kim

On Saturday, March 28th, disability rights advocate April Dunn died from complications of the coronavirus at age 33. She lived with cerebral palsy and obsessive-compulsive disorder. After facing difficulties attaining a college education, Dunn worked with Louisiana lawmakers to enact Act 833 in 2014, which offers alternative ways for people with disabilities to obtain a high school diploma. Her work in the state legislative led to an additional law, passed in 2016, that expanded educational opportunities for people with disabilities.

Dunn has worked tirelessly to promote and improve the lives of people with disabilities. It is a tragedy to have lost her too soon, especially as she had just begun her career as a government staffer and disability rights fighter. We can only fathom what more greatness she could’ve achieved if her life wasn’t cut short.

The New York Times mentioned in her obituary that during the ride on the ambulance, Dunn asked her mother an urgent request: “Mommy, when you come by, be sure to bring my cell phone and my notepad. I still need to wish everyone a happy birthday.” Even during the last moments of her life, Dunn wanted her loved ones to know she was thinking of them, putting their needs in front of hers.

Over the past few months and weeks, COVID-19 has taken the lives of too many loved ones all around the world. It especially hurts to hear about the deaths of those in our very own CP community, as well as the overall disability community. It’s okay to feel saddened and even defeated during times like this.

News organizations have repeatedly reported that in some states, people with cognitive and intellectual disabilities — including Down syndrome, cerebral palsy, and autism — are a lower priority for lifesaving treatment. As hospitals across the country face rapid shortages of medical supplies, such as ventilators, doctors have to make difficult choices for whose lives to save first. Oftentimes, people with a greater likelihood of survival and positive outcomes receive access to limited resources. In other words, if you have a preexisting condition, there is the concern that you will receive proper care

Although the scarcity of medical supplies calls for tough decisions, it is not okay that people with disabilities are deemed less worthy of medical care simply because they are disabled or chronically ill. America has an ever-so complicated history of eugenic, namely viewing the disabled community as a threat to the overall productivity of society. In the 30 years since the passing of the Americans with Disability Act, we have made monumental strides in steering away from that entrenched thought pattern and viewing people with disabilities as equals. However, as the pandemic continues to spread, the same caliber of principle should be applied when treating infected patients with disabilities and chronic illnesses.

We extend our deepest condolences to the family, friends, and colleagues of April Dunn. Regardless of whether you personally knew Ms. Dunn, her loss creates a ripple effect of mourning within our tight-knit CP community. During these tiring and unprecedented times, it is more important than ever before to practice both mental and physical wellness. We are (virtually) here for all of you.

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Blog written by Sarah Kim

I will be honest. It took everything I had in me to wake up at an appropriate time this morning, wash up, eat breakfast, and get dressed as if I would go to work, even though I wasn’t stepping outside of my apartment. It’s been over a week since I voluntarily self-quarantined amid the COVID-19 crisis, and my days are blending together. During a time of widespread uncertainty, I find reassurance and normalcy in maintaining my daily routine. Also, I remind myself of the position of privilege that I am in as a freelance journalist and writer, I still have work flowing in and have a sense of job security for the foreseeable future.

We are facing a challenging time as a nation and as a global community. Instead of being encompassed by fear, anxiety, and frustration, we should take every step to preserve our physical, mental, and emotional well-being. With the President declaring the coronavirus outbreak a national emergency and state officials implementing “shelter-in-place” orders, it’s easy to feel helpless and scared, especially if you live with a disability and/or chronic illness.

Some recommendations set forth by the government and health agencies may be problematic for people with disabilities. For example, if you depend on a personal care attendant, you cannot completely isolate yourself, or else you wouldn’t be able to complete basic daily tasks. Or, the pharmacy is out of the medicine and sanitation products you need because of all the panic bulk-purchases by folks who don’t necessarily need them, and you already have a compromised immune system.

Lastly, you’ve probably heard some variation of the following sentence: “don’t worry, only the elderly and people with underlying health conditions are at risk.” What if you’re in the population of people with pre-existing conditions? For instance, some individuals with CP have accompanying conditions, such as a weak immune system or a chronic respiratory disease. The messaging conveys that those lives are disposable, which is problematic on so many levels.

If you feel the public has ignored you in the health crisis, we are here to tell you that you’re not alone. Here is a list of tips we’ve compiled with our CP community in mind, and we hope they will help you get through this unique time.

1 . It is within your rights to ask your caregiver to wear protective gear and take extra precautionary steps.

If you have caregivers whom you depend on, then you should ensure that they take preventative measures when helping you. Don’t feel ashamed to ask them to wear a mask and gloves when assisting you. Ask them to wash their hands with soap for the recommended 20-30 seconds before and after touching you. Even though you might have quarantined yourself at home, you don’t know where the caregiver has been or what surfaces they’ve touched, so it’s a good idea to take extra cautionary steps.

2. Don’t skip out on your stretches and exercises, even if you’re stuck at home.

With gyms closing and physical therapists canceling appointments, it’s easy to neglect your physical wellness and that could leave your muscles stiff. If you can, do the stretches and exercises at home! You can find videos of modified exercises from our Evolve21 challenge here. This can also be a fun activity to do with whoever is also quarantined with you. Let’s face it; you will run out of Netflix shows to watch at some point. Plus, exercising is an excellent way to access those happiness-spiking endorphins.

3. Take a break from the news and social media.

As I mentioned above, there are some negative, ableist comments being said in the news and on social media right now. Even as a journalist, I’m disappointed in the messages the media is conveying, and I need to take intermittent breaks from it periodically. In most states, emergency alerts are automatically sent to your phone, so you’ll still get the necessary information even if you turn off the news and Twitter notifications.

4. Keep communicating with loved ones, and ask for help!

One thing that put a big, wide smile on my face was receiving a text from a friend asking me how I was doing and if I needed him to pick up any supplies for me. During times like this, depending on your support system is more important than ever before. We are fortunate to be alive during a time when everyone is literally a few taps away — via text or video chat.

I’m pretty old-fashioned — I like to go grocery shopping by myself, in person, and not use delivery services like Amazon Prime Now or Fresh Direct. But as the number of COVID-19 cases increases, going to the grocery store seems risky. As much as I don’t want to admit, carrying the groceries home can be taxing for me. That is why, for the first time in my adult life, I asked my parents to pick up some things for me on their Costco run. Even if you take pride in your independence, don’t hesitate to ask for help, especially if it’s going to make you feel safer and make errands and chores more manageable.

5. Make a list of what you’d like to do after the outbreak is over.

Hopefully, the outbreak will end in the not so distant future. We all know that setting goals is one of the best ways to motivate ourselves. It’s much easier to get through a difficult time when you have something to look forward to at the end. Instead of focusing on how this outbreak is limiting aspects of your life, make a list of all the activities you look forward to doing when all this is over. Remember, this shall pass. Think of how much more you will appreciate hanging out with friends, eating out at restaurants, and resuming your daily routine when COVID-19 is finally at bay!

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Blog written by Sarah Kim

A year ago, I started to have baby fever. Whenever I see a cute little infant or toddler, I can’t resist the urge to pinch their adorable cheeks. I’m at that age when all of your Facebook friends begin to get engaged and married, and shortly after, have children. So, I feel the pressure to proceed onto the next stage of my adulthood. But, as anyone with cerebral palsy knows, everything in life is a tad more complicated with this disability.

From a young age, I knew that motherhood would be a bit more complicated for me than it is for most of my peers. Just to quench my curiosity, I’d google “mothers with cerebral palsy” and “parenting with cerebral palsy.” There are a ton of search results for how to mother or parent a child with CP, but few resources on how to be a parent when YOU have CP.

This is how I feel about most things in adulthood as a person with CP: we’re the forgotten and ignored ones in the overall CP community. There are extensive guidelines and treatment regimens for children with CP. However, it is as if once we’ve grown into adults, there are very limited resources for us “old folks.”

However, there is one piece of information that dominates the search results for “adults with cerebral palsy.” As a result of extreme wear and tear of our muscles and joints, our bodies will experience premature aging and have an early onset of osteoarthritis. Having digested this information, I feel as if I have an internal ticking time bomb, and I want to accomplish everything I want to do before it sets off.

Being an adult with CP constantly feels like stepping into a world of the unknown. Today, I am able to get around NYC without any assistive devices, but I am aware that with every step I take, I put much more strain on my muscles than the average person does. Even with rigorous exercises and therapy, there will be a day when I won’t be able to move my body as easily and smoothly as I can at age 25. This is true for every person, but having CP expedites the process even quicker.

Even if I were to have children in the near future (there’s also the pressure from the ordinary, female biological clock), I worry about how long I could be an active, hands-on mother. I also worry that the kid would have to take care of my aging self at a young age, which would deprive her or him of living a “normal” teenage or young adult life.

Whenever I go down a spiral of having this line of thought, I try to ground myself in resilience and hope. I now have much more physical ability in my mid-20s than I did in my teens. Back then, I could not even fathom living in a city like New York completely independently, having the most fulfilling social and dating life. One beauty of the unknown is that it means there are infinite possibilities.

There isn’t a one-size-fits-all model when it comes to CP or anything else in life. You have come this far in life, regardless of the limited expectations put onto you and society’s wrongful perceptions. You should forge ahead into the long years of adulthood with the same caliber of determination and strength. If there is one sentiment that we were to believe in as a united CP community it is that we are creative problem-solvers. The path to the end-goal isn’t always straight or paved, both literally and figuratively, but we eventually make it to the destination.

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Blog written by Sarah Kim

If you’re a history nerd like me, then you probably wondered about the origin of cerebral palsy at least once in your life. As an ever-inquisitive kid, that was certainly at the forefront of my mind, especially when I was old enough to truly comprehend that I had CP.

Although cases of CP date back to ancient civilizations, including the Egyptians, Greeks, and Romans, the term “cerebral palsy” did not exist and there was no known causes or treatment for this group of neuromuscular conditions, what we now know as CP, until the 19th century.

In the spirit of Cerebral Palsy Awareness Month, we’ve compiled a list of some fast facts on the origin of CP. Even if you have lived with CP all your life, you might learn something new about it!

What was the first known case of cerebral palsy?

It is believed that Siptah, an Egyptian Pharaoh who ruled from around 1196 to 1190 BC, had the first discovered case of CP. Hundreds of years after his death, a medical examination of his mummified body found a severely deformed foot, and medical historians claimed that Siptah’s body was the oldest physical evidence of a person with CP. Although poorly documented, mentions of CP were found in representative art, literary sources, and paleopathology.

When was cerebral palsy first discovered?

According to historical documents, Dr. William John Little is recognized as the first person to study CP and defined it in 1853. Dr. Little himself had a clubfoot and various illnesses from childhood, including polio, so he decided to turn his experiences into a lifelong project to understand and help others with similar symptoms and conditions.

However, at that time, the diagnosis was referred to as “Little’s Disease” or “cerebral paralysis.” Dr. Little presented his research to the Obstetrical Society of London, where he provided the first concept of CP. He explained that children with the condition have an injured nervous system that results in spasticity. British neurologist, Sir. William Gower expanded on this by linking paralysis in newborns to difficult births.

Who came up with the term “cerebral palsy” and when?

In 1887 Sir William Osler coined the term “cerebral palsy” and applied it to Dr. Little’s research. Sir Osler conducted further research on CP and wrote a book entitled The Cerebral Palsies in Children. In the book, Osler summarized the lectures he gave on the condition, which included numerous case studies and suggestions for the possible causes of CP.

In the same year that he wrote The Cerebral Palsies in Children, Sir Older became Chief of Medicine at what was then the recently-established John Hopkins School of Medicine. While waiting for the opening of the medical school, Sir Osler wrote the medical textbook, The Principle and Practice of Medicine. To this day, he is regarded as the father of modern medicine.

What were the initial theories on the causes of cerebral palsy?

Dr. Little theorized that CP only occurred due to difficult childbirth, specifically the lack of oxygen a newborn received at the time of delivery. However, Dr. Sigmund Freud, a world-renowned psychiatrist and neurologist, was the first to state that CP might be caused by abnormal development before birth. He hypothesized that something might have occurred during fetal development and that CP was associated with other disorders, such as intellectual disabilities, visual impairments, and seizures.

In 1893, he published the book, On the Knowledge About Cerebral Diplegias of the Childhood Age (in connection with Little’s Disease). During the time, Dr. Feud’s theories were largely ignored, as the majority of medical professionals still relied on Dr. Little’s findings. Years later, Dr. Freud’s theories were reconsidered when extensive research proved that oxygen deprivation accounted for only 10% of cases.

When was the first center for cerebral palsy treatment and research founded?

In 1937, Dr. Winthrop Phelps founded the Children’s Rehabilitation Institute, the first of its kind, in Maryland. The institution was dedicated to the treatment and care of children with CP. In 1932, Dr. Phelps published the first professional journal article about CP since 1843. In it, he insisted that not all affected children had cognitive challenges, but instead, only their motor controls were impaired. Dr. Phelps also noted that people with CP could be productive members of society.

In 1947, Dr. Phelps founded the American Academy for Cerebral Palsy with five other doctors who were working with patients with CP. He was elected as the first President. Over 70 years later, the organization was renamed the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), and still exists today.

When did activism and advocacy for people with cerebral palsy start?

Marie Killilea’s two New York Times Bestselling books, Karen and the sequel, With Love from Karen, could be viewed as the start of patient/parent advocacy for CP. One of Marie’s children, Karen Killilea, was born three months prematurely in 1940 and failed to reach developmental milestones. Doctors couldn’t give Marie and her husband James a clear diagnosis and were overwhelmingly pessimistic about their daughter’s prognosis. A few years later, it was determined that Karen had CP. Against doctors’ suggestions, Marie and James kept Karen at home instead of institutionalizing her.

Marie was inspired to advocate for Karen and other people with CP. She co-founded the Cerebral Palsy Association of Westchester, as well as a national organization that later became United Cerebral Palsy.

When and how was the Cerebral Palsy Foundation created?

We can’t talk about the history of CP without mentioning the formation of our very own, the Cerebral Palsy Foundation! In 1949, Isabelle Weinstein Goldenson and her husband Leonard, who was at the time the president of the United Paramount Theatres and ABC Television, began seeking treatment options for their daughter who was recently diagnosed with CP. With people like Marie Killilea, as mentioned above, and New York businessman Jack Hausman and wife Ethel, Isabelle founded United Cerebral Palsy.

In 1955, Isabelle took one step further. She convinced Harvard Medical School’s Dr. Sidney Farber of the need for research into the prevention of CP. With that, Dr. Farber brought in 14 of the top medical scientists to form the United Cerebral Palsy Research and Educational Foundation, known today as the Cerebral Palsy Foundation (CPF). Over the past 65 years, CPF has flourished into the largest non-government founder of CP research in America!

Finally, how did National Cerebral Palsy Awareness Day, and later Month, start?

Despite CP being the most common motor disability in children, there was no national awareness day for it, but there were such days for practically every other disorder and disease. So, in 2006, Reaching for the Stars (RFTS), an education and advocacy group run by parent volunteers, decided to make one. Cynthia Frisina (current CPF VP of Partnership), who was then RFTS co-founder and executive director, teamed up with RFTS parents in Georgia to petition the state to establish March 25th as National CP Awareness Day. Since people were already embracing green for St. Patrick’s Day, the organizers thought it’d be an easy color for folks to deck themselves out in on March 25th as well.

Then in 2014, RFTS began to expand National CP Awareness Day into the whole month of March. That year, the organization started to create green t-shirts for supporters to wear and green ribbons and related images for social media. The idea spread like wildfire and people across the U.S. embraced the idea and encouraged their communities to honor the month by lighting buildings green, issuing proclamations, organizing school events, and wearing green shirts and ribbons.

Last year, RFTS merged with CPF to spark an even greater impact for CP Awareness Month. Our campaign GoGreen4CP.org is all about going green, celebrating top influencers in the community, and shifting societal perceptions on CP!

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Although at times it might seem as if things in the CP world are moving slowly today, in terms of policies and scientific discoveries, it is so important to remember where we started from and how far we have come. Today, cerebral palsy in infants is detected at very early stages of life, and that means interventions can occur faster than they could before. With technological innovations occurring at rapid speeds, technology is filling in the gaps between a person’s physical abilities and their greatest potential. Laws and policies, such as the ADA, although not perfect, advocate and protect the rights of people with disabilities and help advance their lives.

During this month, let’s take a moment to appreciate doctors like Little, Osler, and Freud, who helped develop the concept of cerebral palsy and opened the doors for many more discoveries and innovations. Today, people with CP are leaders in their respective fields, earning the highest academic degrees, raising families, and making significant contributions to society.

Sources:

“Hallmarks in the history of cerebral palsy: From antiquity to mid-20th century” https://doi.org/10.1016/j.braindev.2012.05.003

“Cerebral Palsy: A Historical Review”
https://doi.org/10.1007/978-3-319-67858-0_1

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Blog written by Sarah Kim

March 8th is International Women’s Day and we, at the Foundation, are celebrating extra hard this year. For the first time ever, our staff is comprised of all women, from our Executive Director Rachel Byrne to social media associate Josephine Harrer. I, for one, am honored to have joined the Foundation’s all-female team to be a part of a revolutionary change in the world of cerebral palsy research and advocacy.

Way too often, women with disabilities are left out in the mainstream women’s empowerment and feminist movements. The narratives of women with disabilities are, either intentionally or unintentionally, excluded in those broader conversations. Even fictional portrayal of women with disabilities is way behind. There’s a minuscule number of disabled characters played by disabled actors in movies and TV shows, and out of that pool, the majority of characters are white and male.

Rather than dwelling on the negative, we want to give well-deserved recognition to women with CP who are trailblazing in their respective fields. Not only do these women have to combat sexist remarks in their workplaces, but also ableist stereotypes and misconceptions. They’ve achieved greatness not despite or their CP, but rather with it.

This list only represents a fragment of women with CP around the world excelling in the fields of medicine, law, athletics, entertainment, policy and advocacy, and so on. Each of these women is making a path for future women with CP and other disabilities to shatter their own glass ceiling. In an ideal society, women with disabilities would have the same opportunities and a fair chance at success as their nondisabled peers do. Nonetheless, we applaud these following women for all that they do, and we are honored to give them well-deserved recognition on International Women’s Day.

Imani Barbarin

Imani runs the blog, Crutches & Spice, where she writes about disability culture and her life experiences as a Black woman with CP. She also works as the Director of Communications & Outreach at Disability Rights Pennsylvania and a public speaker. She holds a masters in global communications from the American University of Paris, and her work centers around the intersection of disability, race, and culture. Imani’s work has appeared in Forbes, NPR, Bustle, and National Disability Rights Network.

Maria Batalova

Maria is a Russian Olympic ice hockey player with CP. She plays for the Tornado Moscow Region and Russian National Team. In 2017, she participated in the International Ice Hockey Federation (IIHF) World Championship.

Dr. Janice Brunstrom-Hernandez

Known as Dr. Jan by her patients and family, Janice is a leading pediatric neurologist who focuses on treating children with CP and has CP herself. She is the director of 1 CP Place, PLLC. in Plano, Texas. In June 1998, Dr. Jan founded the Pediatric Neurology Cerebral Palsy Center at St. Louis Children’s Hospital (SLCH) and Washington University School of Medicine and directed the Center until 2014. In  2003, she founded the Carol and Paul Hatfield Cerebral Palsy Sports Rehabilitation Program at SLCH that includes Camp Independence, an intensive adapted summer sports program for children and adolescents with cerebral palsy. Dr. Jan’s contributions to the CP community are long-lasting, and she has more accomplishments than what can fit into one page!

Hannah Dines

Hannah is a British T2 trike rider with CP who completed in the 2016 Rio Summer Paralympics. She started cycling in 2013 having done RaceRunning at World level prior to that.  When she’s not cycling, she’s a sports podcaster for BBC and a contributing writer at The Guardian. Hannah has written about sports, disability, women’s issues, and climate change.

Ila Eckhoff

Ila has been the director of derivative operations at BlackRock, an investment firm, and has over 30 years of experience in the financial services. She is on the board of directors at the Foundation and lives with CP. Ila has had an impressive career in business, a field that is not only ill-representative of women but people with disabilities as well. At BlackRock, she is responsible for Industry and Counterparty Management, representing Blackrock in industry forums and on advisory committees at SIFMA, ISDA, and IHS Markit.

Diana Elizabeth Jordan

Diana is an award-winning actress, writer, producer, and director who has advocated for Hollywood to be more inclusive and representative of people with disabilities. Her CP affects her speech and gait but nevertheless appeared on over 40 shows and movies, including the classic 7th Heaven. Diana was the first actor with a disability to earn an MFA in acting from California State University Long Island in 2001. She also has her own arts production company called The Rainbow Butterfly Cafe.

Linda Mastandrea

Linda is a record-breaking, two-time track and field Paralympian with CP, making her one of the most decorated paralympic athletes in US history. She is now a civil rights and disability attorney in Chicago. Linda serves as the principal of a law firm that focuses on disabilities, civil law, and fighting discriminatory actions in housing, education, employment, and government services. Together with her sister Donna, she published the book, Sports and the Physically Challenged: An Encyclopedia of People, Events and Organizations. Linda was the first female Paralympian to be inducted into the National Italian American Sports Hall of Fame.

Maria Town

Maria is the president and CEO of the American Association of People with Disabilities and lives with CP. She is forever changing the economic and political landscapes for people with disabilities. Previously, Maria has served as the Director of the City of Houston Mayor’s Office for People with Disabilities, the Senior Associate Director in the Obama White House Office of Public Engagement, and a policy advisor at the Department of Labor’s Office of Disability Employment Policy.

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Blog written by Sarah Kim

If you have any disability, then you probably have pondered on this question once, or ten times, before: should I self-disclose my disability on the job application form? Unlike going into the job interview, where your visible disability cannot be concealed, the power lies ultimately in you to check that box on the form.

When I was going through the job application process, I ran a mini-experiment. On some, I left the whole Equal Employment Opportunity Commission self-disclosure section blank, not even disclosing my gender or race. On others, I revealed everything, including my disability — on a handful I selected the “I prefer not to disclose” option, which many people believe to mean, “yes, I have a disability, but prefer not to tell you now. I struggled tremendously with this portion of the job application forms. It almost made the actual application — submitting a resume and cover letter — seem much easier in comparison.

After filling out a few dozen (yes, dozen) applications, I noticed a pattern: I’ve received far more interview offers from job applications in which I did not disclose anything on my identity than from the ones where I did. Although this was not the case every single time — I received a handful of interview requests although I had disclosed my disability. However, the pattern was noticeable enough to call it a trend.

There is no one-size-fits-all approach to this, neither in theory nor in practice. The Americans with Disabilities Act does not require you to disclose your disability when you get hired, in an interview, or on the application. Legally, employers cannot ask anything prying in an interview and cannot discriminate against you based on disability if you can perform the duties of the job with or without reasonable accommodations. (If you need advice on requesting accommodations at work, read my other blog post here.)

I have two ways of viewing this issue of disclosing your disability. On the one hand, I fear that employers would see me merely as a diversity hire, to check off the box on their end. On the other hand, I know that there still are negative perceptions of disability, and I don’t want that to prevent me from even getting my foot into the door. The mainstream public still puts all disabilities into one category and therefore sees all people with disabilities the same, when in actuality, even one disability, like CP, can have a broad spectrum. When this concept is applied to disabilities as one entity, the range is immeasurable.

However, choosing whether to disclose the information on the online form is the only time I have agency over my disability. My CP becomes apparent whenever I make a move or say a word; there’s no way of “concealing” it. It is in little snippets of moments — like checking that box on the job application — that I can be seen as just a person, not as a disabled person. I often feel as if I’m pressured to disclose my disability right after I receive the interview offer, mainly because my CP affects my speech, which is the major component of the interview process. I don’t want the interviewer to feel blindsided by this significant part of my identity. Just as my first name identifies me as female and from my last name, one can assume that I’m Asian, my disability is as significant as those two other characteristics when identifying me.

As I progress in my freelance career, I’m realizing more and more that my disability is at the core of my existence, as it relates to all aspects of the work I do as a journalist and writer. The way I conduct source interviews, the angle in which I approach a story, and the motivation behind my work — all stem from my lived experiences as a woman with a disability. Also, since I work in media, I have a significant online presence, so an employer, or anyone, can quickly figure out I live with cerebral palsy.

Now, I see that disclosure option as an opportunity to claim my disability proudly. If employers are going to automatically toss my application at the sight of the “d” word, then their workplace probably doesn’t embrace the true meaning of diversity and inclusion. And I don’t want to work at a place where my core values are not respected.

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Blog written by Sarah Kim

I remember when I was considering going on birth control a few years ago, I wanted to find out how, if at all, my cerebral palsy would cause certain side effects. As a naturally anxious person, I was paranoid about getting pregnant, although I always used protection. So, I wanted to have ease of mind by having an extra level of prevention. However, to my dismay, there weren’t any resources available that addressed the complexities a woman with cerebral palsy might encounter when going on any form of birth control.

While there was plenty of research about how birth control affects women in general, no information existed on its effects on women with physical disabilities, let alone CP. The lack of research and resources stems from the entrenched misconception that women with disabilities are asexual and therefore don’t need to go on birth control. Just like other women, we are entitled to make our own decisions about our bodies. To do so, we deserve to have medical professionals who are well informed on the differential effects of procedures and pills on differently-abled women.

A common theme that appeared in my research on this matter was the practice of coerced sterilization for eugenic and prevention purposes. While women with physical disabilities are more vulnerable to sexual abuse than nondisabled women, this sends multiple negative messages. First, existing research focuses on women with cognitive disabilities, but lumps it together under the umbrella of all disability, which dangerously reinforces the misconception of physical disabilities equating to cognitive deficits. Second, it shows that there is a presumption that exists in the medical field that women with disabilities are not interested in or are incapable of engaging in sexual activities.

Reproductive health justice for women with disabilities is behind, but slowly emerging. The following is an incomplete list of the precautions a woman with CP might want to take into consideration before going on birth control. CP has a wide spectrum, and there is no one-size-fits-all solution for contraception.

As in other medical practices, doctors prescribing birth control options might not have prior experience with patients with disabilities. As a result, medical professionals may or may not ask you the appropriate or necessary questions associated with contraception. Therefore, it is exceptionally important for you to do your due diligence by advocating for yourself and demanding for all your questions to be answered.

1. Based on your level of mobility, you might be prone to blood clots.

Hormonal birth control — like the pill, patch, and ring — contains estrogen, which causes blood clots in some women. The combination of increased risk from limited mobility plus increased risk of estrogen may increase the chances of blood clots developing. If you are typically not physically active, consider staying away from hormonal birth control.

Even if you are physically active, consult your family to see if there’s a genetic history of blood clots. Too often, doctors only ask about the physical disability the patient has, forgoing screening for unrelated conditions that they might have or that run in the family. True story: a dear friend who was a college athlete, was on the same pill as me. I experienced no issues with being on it, although I was not as physically active as her, and after a few months, she was hospitalized for a major blood clot. It turned out there’s a history of a blood disorder in her family, and that wasn’t taken into consideration before the doctor prescribed her the pill.

2. If your CP presents low bone density, certain contraception can increase the chances of bone breaking.

Sometimes in people with CP, bone density is significantly decreased and causes osteoporosis, a condition in which the person is at risk of fractures because of low bone strength. The Depo-Provera birth control shot reduces minerals in bones, causing weakened bone strength. So, if you already have osteoporosis, then the shot could further increase the chances of bone fractures.

3. Consider the state of your mental wellbeing.

The rate of depression and anxiety prevalence in people with disabilities is two to three times greater than the rate in the general population. Since it is only in the recent decade that society has become more accepting of mental illness, it is likely that some people don’t get diagnosed until adulthood. For me, it was when I got to college that I realized I had depression and anxiety, which was around the same time I went on birth control.

If you have symptoms of mental illness and go untreated before going on hormonal birth control, then the synthetic hormones in the contraception can magnify those symptoms, which can lead to grave consequences. So, it is crucial to be transparent with your doctor about the state of your mental health. Depending on how certain birth control affects mood, your doctor might advise you to go with a non-hormonal option.

4. For intrauterine device (IUD) insertions, consider the level of your spasticity and/or pelvic sensitivity.

IUDs are shaped like a “T” and slightly bigger than a quarter. They are inserted into your uterus and prevents pregnancy by stopping sperm from reaching and fertilizing eggs. Some women with CP have heightened sensitivity in their pelvic area or have uncontrollable spasms or contractures. These factors can make IUD insertions especially hard and may require the use of anesthesia. If an IUD is your desired type of contraception, then you should discuss foreseeable complications that might arise during the insertion procedure with your doctors.

Remember, finding the right birth control method is different for each woman and can sometimes require trial and error. There isn’t an exact science to finding the right contraception, as each woman is different and each case of disability varies. It is normal to try a few options before you find the one that works for you. It requires patience and good communication between you and your doctor.

For me, the pill didn’t work for reasons not involving my CP. Certain pills are effective only if you take it at the same time every day, and my daily schedule in college was unpredictable. On top of that, I had never taken a prescription before this, so having to do so at a specific time each day was asking too much from my college-aged self. Therefore, with the consultation of my gynecologist, I went the IUD route and almost three years later, I couldn’t be happier.

People with CP spend most of our lives having to think outside the box to find alternative ways to achieve our goals. The same principle applies to when diligently determining the right birth control for you. If you’ve decided to go on birth control, then you deserve to explore all options to do so!

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Blog written by Sarah Kim

As spring approaches, millions of high school seniors get one step closer to their career and to becoming the person they have dreamed about growing into since they were children. Receiving college acceptance letters is one of the most profound experiences in a young adult’s life. Moving out of your childhood home and stepping into the real world is a majorly exhilarating life event.

It is also terrifying and nerve-wracking, especially if you choose a school that’s far from home. For students with disabilities, it adds another layer to all of this. Incoming college students often have intense anxiety and endless questions about how they will approach the next two or four years.

For me, and as it was the case for many other students with disabilities, school administrators had always ensured that I had all the accommodations readily available for my academic success from elementary to high school. But when I got to college, I had to seek help by myself and become my own biggest advocate. Luckily, most college campuses are equipped with a designated office of disability services with a team of staff members whose job is to be a liaison between students and professors/teaching assistants. Their job is to ensure the most suitable accommodations are provided to all students who register with their office. The office also works with residential life to place students into accommodating dorm rooms.

The Americans with Disabilities Act was established so no person with a disability would be discriminated against. It states that the higher education institution must make reasonable accommodations for any individual with a disability. Below are the key points that relate to college students:

• The Law protects anyone who has a “physical or mental impairment that substantially limits one or more major life activities.” This covers physical, sensory and health-related disabilities, psychological disorders or attention disorders and learning disabilities.
• Reasonable accommodations must be made, but colleges don’t have to fundamentally alter programs or reduce academic standards for any student.
  The appropriate accommodations will be determined based on your disability and individual needs.
• It is the student’s responsibility to inform the college of his/her disability.

No student should feel embarrassed about having to request accommodations. During undergrad, I was on the board of a committee that advocated for students with disabilities, and too often I heard cases in which the student waited until they were on the verge of failing a class before registering with the office of disabilities. While it is understandable to feel nervous or ashamed about asking for help, it shows maturity and resilience when you advocate for yourself and exhaust all the ways to be the best student you can be. Academic accommodations play a crucial part in leveling the playing field so students are not disadvantaged just because they learn differently or have different abilities.

How to start the accommodation request process:

When you register with the office of disability service is totally up to you, but it is recommended to start the process soon after you commit to a school. Visit your college’s website and search for the Disability Office’s page. You might also want to search for ADA, accommodations, or students with disabilities to ensure you get to the right place. Since it might take you some time to collect the required set of documentation, you definitely don’t want to wait until the last minute to start the process.

Most colleges require you to submit supporting documents that explain the nature of your disability or diagnosis. The documents must outline how the disability affects the academic process, and if applicable, the dormitory life. The documentation should not be over three years old and must be from medical providers. So, submitting your IEP will not be sufficient. The medical professional must also provide a list of accommodations that you might need, such as extended time for in-class assessments, note-taking, flexible attendance policies, or large-print textbooks. Not everyone will receive the same accommodations, even if they have the same disability since each individual has a unique set of strengths and weaknesses.

Shortly after you submit the accommodation request, you’ll receive a notification from the disability services office to schedule an intake appointment with a disability counselor. The counselor will guide you step by step to come up with a list of accommodations you’ll need for the upcoming academic year. Before going into the appointment, think of what’ll best equip you to be successful in this new stage of life. Since you’ll be new to the counselor, it is important to be confident in advocating for yourself and your needs.

After the appointment, you’ll receive an accommodation letter to bring to each of your professors. The letter will not disclose your disability or diagnosis, and that information will remain confidential, in compliance with HIPAA. However, it is up to your discretion whether to share information about your disability with your professors.

What to do once you’re on campus:

Within the first few weeks of the semester, make an appointment to talk with your professors about the accommodations you’ll need. As an anxious freshman, I remember I emailed all my professors before classes started to introduce myself and to explain the accommodations I’d need. Since I have a speech impediment, I thought this would be a good way to break the ice. However, I soon learned that the first two weeks of the semester are known as the “shopping period,” where you sit in a few classes to decide which ones you will definitely take that semester. So, it might be smart to wait until your class schedule is set in stone before approaching your professors.

Meeting with professors can be intimidating, especially as a freshman. However, keep in mind that your professors want you to succeed and they want to know how to best support you. If a particular professor is being difficult about your accommodations, reach out to your disability counselor and they’ll help you resolve any conflict. Professors cannot deny you the accommodations listed on the letter, so take steps to address any miscommunication that arise.

Unlike in high school, your parents or guardian cannot contact your professors or deans on your behalf. Higher education institutions, like college and graduate school, falls under the Family Educational Rights and Privacy Act (FERPA), and all academic responsibility is on you. Therefore, it is imperative that you keep track of deadlines and tasks. Each college has different policies, so make sure you familiarize yourself with them. For example, if you need extended time on tests, you may need to schedule each exam with the disability office days, if not weeks, before the exam date.

In college, it is normal to need different accommodations than you had in high school. If your accommodations are not working, then contact your disability counselor to revise them. You really cannot compare college to high school, and as you go through the first semester, you’ll get a better sense of what works and what doesn’t.

College can provide some of the best years of your life and prepare you to enter the rest of your adulthood. You will make some mistakes along the way, but you will have a sound support network to get you back on track. From now until the start of college, enjoy the rest of your high school experience and take pride in the fact that you’re embarking on a very important phase of your life!

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Blog written by Sarah Kim

“Thank you for coming in for the interview. We’ll be in touch.” Ever since graduating from Columbia Journalism School in May 2018, I’ve heard a variation of that more than a dozen times, often accompanied by a sympathetic smile. I’ve seen all the discouraging statistics, including that people with disabilities make up less than one percent of those who work in the media. As for the overall employment-population ratio for persons with a disability, it’s 19.1%, compared to the ratio for those without a disability, at 65.9%.

Regardless, I hoped that I would beat the odds.

My cerebral palsy affects my mobility and speech. I walk with a noticeable limp and abnormal gait, but I always get myself to wherever I need to be. I make sure my speech gets understood, whether through repeating myself many times or writing things down. Although as a reporter whose most basic form of communication can present itself to be a struggle, I try my best to make the listener’s job as easy as possible.

I’ve pushed through biases that teachers and professors have laid on me and graduated from Barnard College with honors. Afterwards, I embarked on an intensive 10-month master’s program in journalism. In the world of academia, I was a shining star. In the real world, not so much.

Job applications have become depressingly predictable. Just reading the preview line saying “Thank you for your application. Unfortunately…,” I already know I didn’t get the position. Eventually, I’d look up the person who did receive the offer, and notice we have the same qualifications—sometimes I’d have more experience than they do. After going through this again and again, I’ve become suspicious: Is there space in newsrooms for journalists with disabilities? For folks like me? In the overall job market?

For as long as I can remember, I dreamed of being a breaking news reporter. Chasing politicians and lawmakers for quotes and always being on the run was extremely attractive to me. I grew up with the mindset of, if I give something all of my efforts, then I’d eventually achieve it. I wasn’t prepared for the fact that my disability would be more of a problem for other people than it ever has been for me.

Although under Title I of the ADA, an employer cannot discriminate against a candidate if their disability prevents them from performing duties that are not essential to the job requirement. Employees must be qualified to adequately perform the duties of the job, regardless of whether you need a reasonable accommodation, to be covered by the ADA. This also means that you must fulfill the requirements for the position — education, experience, skills, etc.

Reasonable accommodations may include:

• Flexible or modified work schedules
• Adjustment of training materials and employee policies
• Providing new or modifying existing equipment
• Making the workplace more accessible by people with disabilities
• Job restructuring
• Reassignment to another position
• Providing interpreters

Many online job applications nowadays have an optional section where you can disclose your disability, along with your race and ethnicity, gender, and veteran status. According to the Equal Employment Opportunity Commission (EEOC), the applicant can choose not to disclose information about a disability or medical impairment in the application process. However, if reasonable accommodations are needed during the pre-application, application, interview, or pre-employment assessment process, then you may need to disclose the information.

In my case, I frequently made it to the interview and the pre-employment assessment (many journalism and editorial jobs require the applicant to complete a writing assessment). After weeks of anxiously waiting, I’d receive the dreaded rejection email. It is almost impossible to pinpoint if the employers were biased or discriminatory against my disability, so that’s not enough a bring upon a lawsuit or complaint. However, as I’ve been seeing a clear pattern in receiving rejection emails — especially ones that state “we cannot move forward with your application,” and not “we’ve decided to move forward with a more qualified candidate,” — my suspicions arise.

Eventually, I’ve learned the best way to approach the whole process is to be transparent about my disability right from when I get invited to an interview. I am straightforward with the recruiter about my disability, particularly about my speech impediment. If I am confident and secure about my ability to perform the job, then that energy transcends to the employer.

People with disabilities have a broad range of talents and skills; it’s a disservice to the overall economy and society for them not even to be given the chance to showcase and contribute their abilities. Employers should focus on the qualifications of the disabled candidate, and not prematurely worry about the accommodations or adaptations needed.

As for me, it has been about two years since I graduated from journalism school, and I have yet to land a full-time job or internship. Instead of wallowing in my sorrows, I’ve fully embraced the freelancer’s lifestyle. Editors are much more likely to give me a chance when I’m behind the computer screen. Right now, I’m a permanent freelance contributor for the Diversity and Inclusion section at Forbes, and I occasionally write for publications like Teen Vogue, Healthline/Greatist and Glamour. I’ve also recently landed two book deals.

Along the way, I’ve picked up some unexpected, but still valuable, opportunities, such as assistant producing a BBC Radio 4 show, writing for Martha Stewart Weddings, publishing long-form magazine pieces, and blogging about fashion and wellness for a startup publication. In this freelance space, my disability is unseen, and all I have to show is my work. I can control how much of my disability is shown, or not shown.

I haven’t given up my dream of working alongside other reporters at a mainstream media outlet, just yet. But if there’s one lesson that living with a disability has taught me, it’s that I often will not get to a destination on a straight path, either literally or figuratively.

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Blog written by Sarah Kim

Let’s face it: going to a gynecological appointment for the first time is scary for everyone. But having any kind of disability adds a whole other level of nuance to it. Although changes are underway, the medical system has a long, wrongful history of discriminating against women with disabilities in sexual and reproductive health. This is largely because of the inaccurate, stereotypical view of women with disabilities as asexual beings. However, they are just as likely to be sexually active as their peers without disabilities.

Luckily, the inaccurate presumptions are dissipating, and medical professionals realize the need for more comprehensive and adaptive OB/GYN care for women with disabilities. For example, the Cerebral Palsy Foundation’s Women’s Health Initiative partnered with four institutions to address and improve the state of sexual reproductive health for women with disabilities. NYU Langone’s Initiative for Women with Disabilities has a team of gynecology and wellness providers who specialize in seeing patients with disabilities.

Regardless of which gynecologist you go to, it is crucial to prepare yourself for the appointment. Particularly regarding gynecological care, self-advocacy plays a massive role in ensuring your first appointment goes smoothly and comfortably.

I have spastic cerebral palsy, making involuntary movements hard to control in certain situations, particularly when I’m nervous or uncomfortable. I booked my first gynecological appointment at the start of college since I was being sexually active by then. Although the American College of Obstetricians and Gynecologist recommends that girls have their first OB/GYN appointment between the ages of 13 and 15, I was comfortable waiting until I could go by myself when I was 18. (note: I’m not a medical professional so don’t follow my example!)

Before the Appointment:

After doing a ton of research, I got a better sense of what the appointment would entail and what kinds of accommodations or adjustments I’d need. It’s common that the average gynecologist has little or no experience with disabled patients, so it’s a good idea to call the doctor beforehand to describe the nature of your disability and explain the help you’d need during the examination.

Ask if the facility is accessible and if they have adaptive examination tables, should you need them. If you’re going to the appointment by yourself, consider requesting to have a nurse practitioner in the room, especially if you’ll need help to get on the table or keeping your legs apart during the examination.

If your spasticity would prevent you from keeping still during the exam, your doctor may recommend muscle relaxation techniques such as meditation, or may even prescribe muscle relaxants or sedatives, depending on the scheduled tests.

Before going into the appointment, have your medical history and prescription list ready. Be prepared to answer questions about personal details such as your menstrual period, sexual activities and partners. Also, consider wearing clothes that you can easily get in and out of. Usually, you’ll just have to take your bottoms off, and you’ll cover yourself with a privacy sheet when on the table.

During the Appointment:

You may not need to have a pelvic exam or a Pap smear during your first visit, especially if you’re under the age of 21. Your first visit can entail a general physical exam — similar to ones that your general physician conducts — and an external genital exam, where the doctor looks at your vulva to look for any abnormalities. This exam is also a good way for you to learn about your body.

At the start of the appointment, remember to ask for details about what will take place during the office visit. This way, you can tell the doctor how your body might react, and the doctor can suggest modifications if needed. Also, inform the doctor of any past negative experiences that might trigger you.

Come prepared to ask your doctor about any concerns you may have or if you want to explore birth control options. Based on your level of daily physical activity, the doctor might advise against some hormonal birth controls that increase the chance of blood clots. Your doctor probably has heard of all kinds of questions, so there are no such things as stupid or embarrassing questions!

After the Appointments & Further Tips:

It is the most important to feel safe and comfortable with your gynecologist. So, look for a new one if you weren’t happy with your first one. It’s common to go through a handful of providers before you find the right one for you. In fact, it took me three tries before I found my match! I am so comfortable with her that I don’t spasm during exams anymore.

Depending on your first appointment, you’ll schedule the next one for six to twelve months from then. If you and your doctor agree on doing a pelvic exam or Pap smear at the next appointment, consider starting the discussion of which method might be best for you. There are differently sized speculum and different lubricants that can reduce as much discomfort as possible. Sometimes, the doctor can perform a blind exam that can forgo the need for a speculum.

Keep in mind that the whole process might be a learning experience for both you and your provider. In an ideal society, there wouldn’t be stigmas against women with disabilities in sexual and reproductive care, but we are still a ways away from achieving that. Your interaction with a provider might improve his and her appointment with the next patient with a disability!

For more information and advice on your first OB/GYN appointment, check out this video series created by CPF!

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Blog written by Sarah Kim

As I progress in my career as a journalist and writer, the more attention and followers I receive on social media. Every so often, I receive a direct message or email from young readers, explaining how I’ve become a role model for them. They express the inspiration they gain from witnessing me not allowing my cerebral palsy get in the way of following my dreams. It was then that I realized I am now the role model that I desperately needed when I was a young girl.

Social media only started to become a “thing” when I entered high school. I still remember the days when Facebook was only available to Harvard students and then to students at other universities. Also during that time, you never saw disability being portrayed on the big screen — although it still isn’t the mainstream nor the most accurate representation, there are a handful of movies and TV shows that, at the very least, attempt to include disabled characters.

Growing up in the turn of the century, I did not believe in tooth fairies or unicorns, but rather I believed that someday and somehow I’d wake up one morning and my disability would be gone. Messages of body image positivity and diversity did not exist, embracing and accepting one’s disability remained a foreign concept. When I was a teen, I would’ve never imagined seeing someone like Aaron Philip — the first black, trans, disabled person to be signed by Elite Model Management — on the cover of Teen Vogue.

I constantly attempted to make my cerebral palsy “disappear” in the background. I’d religiously follow and purchase the latest fashion trend items from Limited Too or Abercrombie & Fitch. Or, maintain my highest score on Club Penguin and dared not to let my Tamagotchi die. In my young, naive mind, I believed that if I made myself “cool” by following the latest trends and fads, my disability would become acceptable, or unnoticeable, among my peers.

Without feeling represented or heard in the world around me, I felt alone and confused about my cerebral palsy. Unlike today in 2020, you couldn’t connect with other people with disabilities with a few clicks or taps in the year 2002. While there are many discussions being held about how social media and technology make face-to-face interactions scarce and infrequent, it also undoubtedly has its benefits. It has the ability to connect you with another person who has the same disability as you from all the way on the other side of the world.

Now, as an adult, I often wonder how different my life would have been if I had the chance to accept and be proud of my cerebral palsy from a younger age, and what it would’ve been like for my family. Today, all the information on treatment and support/social groups related to cerebral palsy, along with any other diagnosis, is right underneath your fingertips. But, back in the day, I could not stand to be in my own skin because I was so obviously different from my peers, and I did not have access to any disability, let alone cerebral palsy, community.

However, I now have tremendous faith and hope for further generations of children with cerebral palsy. The disability family — self-proclaimed crip community — has endearingly embraced their motto, “nothing about us, without us.” It is the social media activism movements, such as #CripTheVote, that is opening the eyes of politicians and government offices to the needs and wants of people with disabilities, and showing them that they cannot afford to keep ignoring us.

Growing up without the tools of the internet, in a society and culture that was yet to embrace the beauty of disability, was hard, to say the least. But, I feel fortunate to now live in a time where diversity is celebrated and where social media helps people find a sense of community that they otherwise couldn’t. I am also honored and privileged to be in a position where I can help make the media and literature become more inclusive of disabilities than it has in the past.

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Blog written by Sarah Kim

One of the best days of my life was when I crossed the finish line after walking a mile in my local 5K race. Not because I placed first, second or third. I didn’t. I came in dead last. As in, the racecourse was closing down, and I still had a quarter of a mile to go. It took me an hour and a half to complete what it took most to finish in 20 to 30 minutes. I was dead tired, sore, my knees were giving in…but I never felt better in my life!

Having cerebral palsy is challenging. I get it. I was born with spastic quadriplegia where it’s difficult for my body to do what I want it to do. My muscles will spasm occasionally, my body stiffens when I talk or try to perform a task as my spasticity goes on “overload”. I sit for long periods of time in my chair, which does not add any benefit to me or my body. At the end of the day, if I haven’t had much physical activity, I know it. My body is stiff and unmanageable and I have a hard time falling asleep at night because my mind doesn’t want to shut down that easily.

There is a reason why the top New Year’s Resolution almost every year is to “exercise to get in shape”. People know being active is good for them, but it’s a difficult thing for anyone to “be active”. Most people like to drag their feet when they “have to exercise.” You see testimony of this around this time every year. Ads start popping up for free 3-month memberships to the local gym, sales on treadmills and other exercise equipment start canvassing the tv’s and internet in order to entice you to “stick to your New Year’s Resolution” of getting back into shape. It’s important for all of us to take care of our bodies, and having a physical disability doesn’t automatically excuse you from trying.

You’ve probably heard the phrase, “Use it or lose it.” Well, it’s true. The less active you are the harder it will be on your body in the long run. It’s a sad fact that according to the Centers for Disease Control and Prevention, nearly half of adults with disabilities who are able to be physically active in some way don’t get any aerobic physical activity at all. Not only can being physically active help you in maintaining or controlling your weight, and help maintain flexibility to greatly improve the function of your limbs, but it can improve your mental well-being and help lower the risk of acquiring heart disease and diabetes for example. When I do exercise or am active, my day is completely different. I think more clearly, have more energy, my mood is more positive and upbeat and I sleep like a baby. My body and mind are better for it. Which is why it’s even more important to stay as active as you can.

I understand being active is easier said than done, believe me, but the rewards far outweigh the trouble. To make it a little more manageable for you, let me show you how to more easily get yourself to be as active as possible.

The first thing to do would be to set a goal. When I walked that mile, it was the absolute best feeling. Why? Because I had set a goal for myself and reached it. Having goals in life is extremely important. Goals help you to stay focused, challenge you, motivate you and build your confidence. According to research done by psychologist, Dr. Gail Matthews, you are 42% more likely to reach your goals if you write them down and have them where you can see them. Your goals on paper help you to stay focused on what you want. As you get closer to reaching your goal you may become deluged with other opportunities that could pull you away from your original goal. However, having it written down keeps you on track.

Start off small. Don’t commit to an hour every day. That is going to leave you frustrated and you will hate exercising all the more. Ten minutes a day. I think you’ll be surprised at how those ten minutes will eventually turn into fifteen minutes and a half an hour! Plus, bigger goals can seem more attainable if you have smaller goals that are doable. Have you ever heard the phrase “you can only eat an elephant one bite at a time”? It’s true. Eventually those small stints of being active will lead to more participation because you feel so much better about yourself both mentally and physically.

Another way to help you become active is to do something that interests you. If you don’t like exercising, making a goal to exercise every Wednesday for an hour probably won’t hold. But if you love a certain show, commit to doing stretches or lifting some light weights while watching that show every time it’s on. Remember, any exercising is better than just being sedentary!

Maybe you like to be around people, then form a group who will commit to meeting once a week to do something together with them. Being with others also helps you to stay committed and hold you accountable. If you know someone else is having to do the same thing you are, it makes staying active much more manageable.

I attended the Conductive Learning Center growing up. They teach mobility-challenged kids and young adults in a group setting how to cognitively and functionally learn to complete tasks by seeing through the whole process. One of the most important elements in doing this was setting physical goals at the beginning of the four or five week session. My friends and I all set individual goals for ourselves and then we motivated and encouraged each other to reach those goals. This was one of the greatest gifts the center ever gave me. At a young age, I learned how to make goals and go after them until I attained them with the help of friends who I knew had my back.

Once you take these steps, being active becomes more a state of mind. You no longer “hate” participating in it because you A.) know it’s a goal you have set for yourself, B.) are just taking it in little doses at first, and C.) enjoy it because you are wrapping it around something you love to do. Together, all of these lead you to think being active is not something “I have to do”, but something “I get to do”. You now have an attitude of gratitude, as I like to call it!

If you still are struggling to get yourself up and be active, the Cerebral Palsy Foundation has made it even easier for you, by creating the first all-inclusive exercise app called Evolve 21. It combines all the elements I just talked about. It’s fun, it’s simple, and it’s easy. Check it out by going here: https://www.evolve21.org and downloading the app. There are now no more excuses for getting out there and being as active as you possibly can! Congratulations on taking your first step!

Johnny Agar
Motivational Speaker
Founder & President of JohnnysPass.com
CPF Ambassador
Product Ambassador for Under Armour & Rifton