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

Every hour another child is born with cerebral palsy (CP).

CP is a brain injury that occurs before, during or shortly after birth however it is not typically diagnosed until after age 2. The Cerebral Palsy Foundation’s Early Detection Initiative is bringing the age of diagnosis down to 6-12 months and in some cases even before babies have left the hospital. This is so important because the brain’s ability to form new connections peaks from 0-2 years of life. If a baby starts therapy during this crucial time, he/she can actually improve and recover function that was lost.

The initiative is about providing families and their children with a game plan for the future. It’s about teaching physicians how to talk to families about the diagnosis of CP. It’s about giving them the tools but also the road map for the future. And it’s about giving them hope. “We have worked with so many amazing families who have told us what it was like to have an early diagnosis of CP including the scary and empowering parts to make sure that this initiative meets their needs,” said Dr. Nathalie Maitre, Director of NICU Follow-Up at Nationwide Children’s Hospital.

“We’ve prioritized early detection at the foundation and now have a network of top institutions across the country implementing best practices today. This ensures families are not waiting the usual 5-10 years it takes to translate research into best possible care,” said Rachel Byrne, VP of Programs at the Cerebral Palsy Foundation.

A Parent’s Perspective

This is Emily’s story. Her son Owen was diagnosed with CP at 6 months.

Everything was OK, until it wasn’t. Owen is our third baby and after a healthy pregnancy and making it to 38 weeks, I thought we would coast into life with three kids and adapt to the beautiful chaos that is life outnumbered by little ones. Somewhere in between, I ended up watching as my newborn baby was packed up into a life-flight helicopter and whisked away before I even got a chance to hold him. My dad was the first to say it, as the panic set in about what we would do next, and it has been our motto ever since: we will do “whatever it takes.” I would do whatever it took to get to Owen at Nationwide Children’s Hospital, I would will him from hundreds of miles away to hang on, to fight long enough for me to get there – and then we could do “whatever it took” together.

I arrived at the NICU just 36 hours later. I had made whatever promises I needed to for the doctors to discharge me – my only focus was on getting to Owen. Most of the NICU stay is a blur, but I do vividly remember the moment they pulled up the MRI scans and told us that Owen had sustained a massive stroke. Time stopped and I thought the world had ended.

There were lots of discussions about “neuroplasticity” and the “resilience of babies,” but I was convinced they were all fairy tales designed to keep me from jumping head first into a pit of despair. Although she may not appreciate the comparison, that next day, just when it seemed the darkest, Dr. Maitre arrived like a fairy godmother. The best gift she gave us was telling us “It is not over. Owen’s story isn’t over; it is just beginning.”  She never made any predictions about what Owen would or wouldn’t be capable of, but she told us about so many babies with similar injuries who were accomplishing so much – kids I would have to see to believe they had had similar starts in the NICU.  She gave back the power I thought we had completely lost – there were things we could do, there were reasons to be hopeful, we were back on track to do “whatever it took.”

We knew leaving the NICU that Owen was at very high risk for cerebral palsy. Armed with that knowledge we were able to jump right in, starting physical therapy at 5 weeks old and researching every treatment and therapy in our area that might be a good fit for his recovery. Dr. Maitre helped guide us and also told us about clinical trials Owen may be eligible for as he got older. We received the formal diagnosis of cerebral palsy at just 6 months and were enrolled in an amazing trial called APPLES the very same day. Knowing to expect that Owen may have cerebral palsy at 3 days old, and getting the formal diagnosis so early, has given us the incredible gift of time. We’ve been able to get out ahead of potential issues, and in some ways anticipate where he may need extra support or where there may be delays in his development.

Owen’s differences have never been a mystery – we didn’t have to fight for a diagnosis or wring our hands as he missed milestones and we didn’t know why. With the Early Detection Initiative we were guided from the very beginning to give Owen the best chance to take advantage of the neuroplasticity and the amazing resilience of his baby brain (turns out that wasn’t something they just made up).  Early Detection let us know that although his trajectory may be different, he will hit milestones in his own time and in his own way, and we can continue to work to find the best tools to support him.

Although it isn’t exactly as I had pictured it, for the most part life has returned to the beautiful chaos I expected when I imagined being outnumbered by little ones. Therapy is a part of our everyday life, appointments are a part of our routine, and we continue to seek out the best ways to help Owen on his journey. We are so grateful we were given the empowerment provided from Early Detection.  Owen may need help in some areas more than his sisters did, but his sisters have their own challenges to contend with, just as all children do. And while it may not be exactly what I had expected, meeting your kids right where they are, doing “whatever it takes” to help them reach their potential, cheering them on as they accomplish what once seemed impossible, that isn’t something that is unique to Owen or to cerebral palsy. It is just the true joy of parenting.

Click here to start listening to the album!

1) As far as I know this is the first album about raising a child with disabilities? How does that feel and what do you hope this album does for the disability community?

When my songwriting partner Pete suggested I write about my family, I was sort of horrified. No way, I’m an ‘artist’, nobody wants to hear about THIS. He made the point that most people, unless they know and/or love someone with a disability probably have no idea what it might be like or how it all might work. He said people might be interested to learn a few things – that we are a family like all other families, that there’s joy, music, and LIFE at our house, just like in everybody else’s house. I thought I needed to keep my music separate from my motherhood. But when I thought about it, I realized, there’s actually nothing else for me to sing about. My family is where my heart is. Through the process, it turned out to be helpful to me to be able sing about what we were going through. My hope is that A Family Album is illuminating with regards to families living with disability, in that we go through the same stuff that the all families go through, highs, lows, laughs, troubles, love and most importantly, joy – even if what we have to deal with might look insurmountable from the outside.

2) How did your son Maceo influence your perspective on life and of course, music?

Maceo has influenced my life and my music in pretty much every way. To boil it down, I don’t know WHAT I was thinking about before he came along. I know I was trying to work hard, make good music and be a good person.  But, I was sort of unmoored in life. When Maceo came along, that’s when life got good. Those first two years were difficult, but we always had each other and the love that erupted in our house with Maceo on the scene has been transformative. The hard parts might be hard as you could imagine, but somehow those are not the most important parts. That’s the biggest lesson that Maceo has taught me.

3) Two tracks are written from your son Maceo’s POV. What went into writing those songs? How did you tackle the responsibility of being authentic to Maceo’s voice?

Internally, this was something I resisted for so long. He was only five years old at the time and I didn’t want to be inauthentic to his voice. However, as a mom I want him to be known. I wanted to give a voice to what he might be feeling with the caveat that if he hated it or even disliked in the future, we would rewrite it together. I remember standing in a parking lot at the beach in Santa Monica and finally finding the courage to press record on the voice memo app on my phone. I tried to imagine what would Maceo might say to me and these words came out.

I can hear you 

And I know the words you’re saying

But when I go to answer 

I can’t forms the words

I can see you 

And I like the game you’re playing 

But when I try to join you

I can’t make it work

But one day

Things will change 

And I will rise above

And we will understand each other

And you will feel my love

By the time I was finished, I was crying. When I got home, I sat with Maceo, told him what I was trying to do and asked him if it was ok with him. He answered “yes” either by rising his left hand or using his iPad. I can’t remember which right now! This is called Multi-modal Communication which is how many non-verbal people communicate. It means, using whatever means is possible in the moment – whether that’s a device, a switch, looking away, a blink etc. Getting his “OK” for the concept in general, I said the words to him. He indicated he liked them and after we recorded it, I played him the record. The smile of approval he gave me was a huge relief. I told you, he’s super opinionated about music and the fact that the music and the words made him happy meant the world to me.

4) Can you discuss the song that most adequately describes your journey with your son and your family?

The song that most adequately describes my journey with my son and family is, “We Love.” All marriages have their challenges and for parents of kids with disabilities, this is amplified. Statistics on divorce in special needs families tell us that 8 out of 10 marriages don’t survive. The chronic stress takes a toll. After writing a couple of songs about troubles we’ve faced, I wanted to write something for Maceo’s dad about how he makes it all work when some days, it just feels so hard. Whether it’s installing mounts for communication devices, a saddlebag hack for Maceo’s wheelchair, keeping us all in incredible music at all times or creating amazing wheelchair costumes for Maceo at Halloween – Joe makes our whole world go round. I wrote a poem about it and from that poem came these words: “With grace, with grease, we love.” Later I realized that though the song was written about Joe, it’s also about all of us loving on another. “In war, in peace, on backs and hands and knees.” The way we get through the really tough times is to love each other however we can, with whatever means at hand and in whatever situation we find ourselves in. That is how my family has gotten though our journey.

5) “Family” is such a fun song that shines light on Maceo’s self-confidence. Can you explain what went into the making of that song and the importance of living loudly?

“Family” is definitely the party song of the album! There are many physical challenges that Maceo contends with but in spite of that, he is a self-possessed and confident kid and that’s what this song is about.

If this fun song were to inspire even one little bit more loving, laughing and celebration that would make me happy, cause those are the things we need in this crazy life. We need those feelings to give us energy for the things we all need to do every day.  This is important when you have a child with disabilities for a few reasons, as it is for parents of typical kids – our days are long, we get tired, we get drained, we get stressed. We need all the energy we can find, to get all the things done on a daily basis that our family needs, not to mention to offset the attendant and often times chronic stress in our lives. Most importantly, all kids need their parents to be in a good frame of mind.  When the parents aren’t happy, a kid feels it and it affects everything they do. Kids with disabilities have so much work to do every day, learning how to do the things that most take for granted. They need all the support in the world and that starts with their parents.

6) You are generously donating some of the proceeds to the Cerebral Palsy Foundation. Can you explain why you chose them and the work they do that you find the most impactful?

I admire the Cerebral Palsy Foundation very much for the focus they place on improving lives of those with CP today and particularly the way that focus extends to families and parents. One incredible tool that Cerebral Palsy Foundation has developed is their CP Channel app. It’s for people with CP, families, friends, and also therapists and general practitioners who want to know more about the condition. There are videos from doctors and experts in all the fields pertaining to improving lives and caring for people with CP. There’s so much there! It’s a treasure trove of support for families. What strikes me the most is how much it will mean to new parents of infants born with brain injuries like Maceo. It was such a crazy confusing time. If I had had this app back then, I would have gotten such comfort, understanding and instruction at a time when I desperately needed it.  In addition to the learning about concepts like neuroplasticity, early activity and other more technical data, just hearing Dr. Nathalie Maitre on the app talk about parenting a kid with CP, made me tear up with relief and joy.

Read Holly’s story.

Working With Chronic Pain

According to the Centers for Disease Control and Prevention (CDC), about 20 percent of people have chronic pain. Other studies with adults have found that up to 84 percent of people with cerebral palsy experience pain and that as many as half feel pain every day. I put my chronic pain in two categories, the pain I can manage and the pain I can’t. I had to have a spinal fusion when I was younger. The orthopedist and the back surgeon placed rods and screws into my back and straightened the eighty-degree “C” curve in my spine into a thirty-degree curve.  Thirteen years later, my back still gets stiff and aches, especially when it rains! I know I can combat the stiffness and pain with physical therapy. As long as I continue to strengthen my weaker muscles, I can alleviate most of the pain and minimize the tendency for my back to spasm. With other issues, regular therapy doesn’t offer the relief I need.

There is one issue in particular – migraines. Migraines for me typically affect one side of my head and are often accompanied by nausea and disturbed vision. Luckily, I didn’t experience this until my twenties when I could understand what was happening. I had one for a week straight before my neurologist found a new combination of medications to help me. It is always about trial and error. Certain contributing factors, like hormones, can make it more complicated.  The medications can make me exceptionally tired. I have to make a choice: I can NOT take any medication and suffer through the pain, or I can take it and sleep a lot.  Either way, I lose.

Sometimes sleep can be my only relief. It can be restorative, not only for the additional muscle aches and nausea, but also for helping the headache subside. Unfortunately, rest also has its downsides. During migraines, I tend to have very violent nightmares.  Sometime it feels like there is no escape.

For all of us who suffer from chronic pain it can make getting to work in one piece extremely hard. While my physical disabilities are obvious, sometimes it is the ones that you can’t see that are the most debilitating. I get some comfort knowing that I am not on this journey alone. So please remember that staying home is NOT a choice that I like to make, I am not choosing to do this to get out of work. I love my job and want to spend my days working with my colleagues, not alone in my room, hoping that the pain in my head will go away.

Read past blogs:

Episode #1 – About Me

Episode #2 – Bridging the Gap

Episode #3 – Music and Mayhem

Episode #4 – Me vs. The Elements

Me Vs. The Elements: My Endless Quest to Keep Dry

There was a day at work when I was not prepared for the rain. It was perfectly sunny and, according to the weather report, it was not supposed to rain until the evening. I was in a restaurant with floor to ceiling windows. Suddenly, it became very dark. It looked like it was nighttime, not the middle of the afternoon. I knew there was going to be trouble. The rain poured down. It was a deluge. In order to leave the restaurant and make my way back home, I needed someone with a large umbrella to walk with me at the same speed as I drove my chair to keep me from getting soaked. We did the best we could, but by the time we got home, my body was sopping wet. Thankfully, I managed to keep the control panel of my power wheelchair dry so I could still drive it. That’s when I realized I needed something new, something that could protect me and my chair from the elements.

So my journey to find the best weather protection began. My current fix or should I say “hack” is a plastic bag. Yep you heard it right, I use a plastic grocery bag to protect my $15,000 chair. And while it may be functional it is definitely not fashionable.  I had assumed many options were already out there and immediately went online to purchase a weather proof solution for all seasons.

Unfortunately, the available products I found did not come close to meeting my needs. For example, you might think a poncho seems like the right protection for someone in a wheelchair. After all it should be able to keep you warm, dry and cover the controls and the electronics, but that’s not true as a poncho is not wind resistant. Imagine the wind kicking up and all of the sudden having a Marilyn Monroe moment with your poncho blowing in your face, impeding your line of sight, increasing your chance of having an accident! No thank you!

I considered a few other options, including a manufactured cover that didn’t fit the model of my chair exactly, but none worked. So for now, it seems that the plastic bag is my best option. The question is what will I do when plastic bags are banned from NYC?

I don’t know why wheelchair companies don’t automatically provide rain protection for the gear controls, which is basically the heart of the chair. You’d think customer safety would be their utmost priority. Maybe it’s how they get us to come in for repairs, knowing we will need to fix the parts that break?

So here is my call out. To all young designers both in fashion and industrial/product design: can someone who is far more creative and intelligent that myself make a better design!?

Read past blogs:

Episode #1 – About Me

Episode #2 – Bridging the Gap

Episode #3 – Music and Mayhem

Music and Mayhem

Traffic in NYC can be crazy with people not signaling, cutting off other drivers or running red lights. For many New Yorkers this drives the love hate relationship that they have with the city. As if the awful sounds of jackhammers drilling and grinding combined with the smell of tar being broken up or laid down isn’t enough of an annoyance on its own- for me as someone in a wheelchair it is a huge safety issue. If I don’t notice this kind of traffic and construction the consequences could be disastrous for myself and my wheelchair. I always need to be on the lookout for blockades (man holes, steam grates etc.). It is often about weaving in and out of the various construction site areas. This time of year it’s particularly difficult with all of the pot holes needing to be fixed. Picture multiple construction crews some with signs and others with huge metal beams. There are also security and giant cement trucks rumbling, churning and spewing as you try to pass by as quickly as possible. Now I’m thinking I might need ear plugs for certain things in the city.

When I start my “walk”, or rather “motor”, I exit Grand Central Terminal and head northwest on 45^th Street to Vanderbilt Ave. Vanderbilt is not only home to a lot of new building construction but also the name of my beloved Service Dog. “Vandy” as I affectionately call her is my constant companion who makes navigating the streets that little bit easier.

After the mayhem of Vanderbilt Ave I then head north to 50^th Street where I take a left to 5^th Avenue.  This is where the grime of New York fades away transforming into one of the most famous AND expensive shopping streets in the world. If I am early I can window shop along the way. After all I’m a huge fan of anything shiny, sparkly or glittery- a girl can dream. I follow 5^th Avenue North to 57^th Street where I turn left and follow 57^th Street all the way to Broadway.

Along 57^th St I pass the world famous Carnegie Hall and it is beautiful. It is a historical landmark that opened in 1891. As I go pass I often think about the classical composers like Beethoven, Mahler and Gershwin who have performed here. I’ve always been drawn to music because of the influence it has and that it can bring audiences together no matter of their age, background or ability. My cousin performed there as part of the Young People’s Chorus. As a young girl I always imagined my sister Stephanie playing flute there too. I remember thinking that anything was possible in Elementary School. As long as she practiced, practiced, practiced! As I pass by I always give a little wave to Carnegie Hall. It is a place that has always given me such joy. Through the grit and the grim of the streets, the sparkles of 5^th Ave and the memories from Carnegie Hall I have made my way safe and sound to work.

Read past blogs:

Episode #1 – About Me

Episode #2 – Bridging the Gap

Bridging the Gap- Becoming a commuter in NYC!

My usual commute to work is the Metro- North Train on the Hudson Valley Line from Westchester to Grand Central. For most this is an easy 35 min train ride from the suburbs direct into the hustle and bustle of NYC. It is a busy commuter line and most mornings my fellow passengers will be engrossed reading the news, their latest book or enjoying the 35 mins of silence, maybe even a nap, before they start their work day.

As I prepare for this journey each day anxiety usually starts to hit about 15 mins before the train is meant to arrive. It all starts with the ‘little metal ramp’. To get on and off the train safely a little metal ramp is used to bridge the gap between the platform and the train. While the Conductors mean well when they try to help me board the train, they never actually know which car the ramp is located. The longer they take to find it, the more I feel bad for the hundreds of people I am now making late for work. A five-minute delay when everyone is staring at you can feel like an eternity. This would be one thing that I would advocate to change that ALL conductors know where the ramp is at ALL times.

Finally getting on the train I try not to be concerned with my tendency to feel claustrophobic. Hopefully I get one of the seats that are set aside for ‘Seniors or the Disabled’, but more often that not I “sit” in the space in between the doors that you exit. These are the ones that specifically say not to lean against them and WATCH THE GAP in giant letters enclosed in a triangle. I hate feeling like I’m in people’s way every time we make a stop and the doors open.  I feel like I’m in a sardine container or something!

For most of the journey I try to look out the windows, I find very few people are willing to strike up a friendly conversation. People are always tuning you out with head phones or playing games on their phones.  It’s amazing how you can be travelling with hundreds of people yet feel so isolated.

After arriving at the station I weave my way in and out of the crowd, strategically trying not to run into anyone… not intentionally, anyway! One positive thing I will say about my journey is that Grand Central Station is one of the most extraordinary landmarks in NYC. If you ever find yourself in NYC for a great (and free) experience, head to the Main Concourse, take a moment, imagine you are in a movie and look up at the zodiac mural on the ceiling, it is truly an amazing piece of art. Most days I don’t have the time or luxury to do this. The only public ‘art’ I get to experience are the foul smelling match box elevators, with spaces so small that I can barely turn around.

Finally, after emerging safely from crowds, I hope the wait for the cab isn’t too long. On a bad day this can be more than 45mins. I then squish myself in the back of an accessible taxi and hope New York City traffic gods are on my side…but that is another story for another day.

Read past blogs:

Episode #1 – About Me

Hi everyone, my name is Phoebe Sherry.

I am a 27 year old female who lives in New York. I also happen to be a person who lives with CP. I am a Community Engagement Associate at the Cerebral Palsy Foundation, also known as CPF since early February, 2018. Some brief history about me, I am a twin and was born 3 months prematurely. I was smaller out of the two of us (less than 2 pounds), but older by a minute. I always say she kicked me out because she needed more room. We both had a pretty rough start to life and needed help with breathing and feeding. I had more problems breathing than her and we were hospitalized at Lenox Hill in the Neonatal Intensive Care Unit for close to 3 months. My sister went home a few weeks before me.

Once we got home my Mom noticed that I wasn’t sitting up or crawling like my sister. She took me to the Doctor. and I was diagnosed with spastic diplegia cerebral palsy at six months. This means, for those who don’t know, I have stiffness primarily in my lower half of my body and specifically my legs.

I am very excited to be starting a blog. It is entitled Staying on Track with Phoebe Sherry. The past year I have been navigating the most efficient ways of getting to work. Whether it is by car, taxi or train each experience is memorable.

It can be as simple as if there is a curb cut or as complicated as will there be steps at a work event. No matter what it is it takes a lot of planning and thinking ahead.

Look forward to bringing you updates on my adventures each week!