Due to COVID-19 precautions, video visits using Epic Telehealth are available for new and existing patients. In-person visits will continue to be available for patients in need of urgent, in-person care. Find out more about your telehealth options here.
Columbia Coronavirus Resource Center
During these turbulent times, we would like to remind you to be aware not only of your surroundings, but of yourself. Stay healthy by recognizing the signs and of COVID-19:
Clinicians and researchers at the Columbia University Irving Medical Center are global leaders in responding to COVID-19. In addition to being at the forefront of the clinical and scientific response to the virus, CUIMC is committed to keeping patients and the CUIMC community informed about COVID-19. Information is updated throughout each day as the impact of the virus changes locally and nationally. Visit here for the Columbia Coronavirus Resource Center.
NewYork-Presbyterian COVID-19 Hotline
If you have concerns regarding COVID-19 you can call the NYP hotline at 646-697-4000. This hotline is available as a public service to provide information only and not to diagnose, treat, or render a medical opinion. More info here. For more information on what to know about COVID or for frequently asked questions go here.
Mental Health Resources
Due to COVID-19 and the unprecedented circumstances that have come with this crisis, it has created a great deal of stress and uncertainty for the community of patients, families, and healthcare staff. If you would like to speak with one of our licensed social workers about this in further detail, please schedule an appointment by calling 212-305-5616.
For online mental health resources, the Department of Psychiatry at Massachusetts General Hospital has curated resources for providers and those they serve into five domains here.
For mental health tips from the WFCPC team click here.
Columbia Fever and Cough Clinics – Call your provider to see if you qualify to be referred to the Fever and Cough clinics. These fever and cough clinics are available to patients who have first been screened (either by phone or via Telehealth) by one of Columbia University’s healthcare providers, and who are experiencing respiratory illness (fever, cough, nasal congestion, sore throat).
Capsule – Free same day delivery pharmacy including over the counter medication. This has been a resource many in our patient community have found useful. *(The Weinberg Family CP Center is not affiliated with Capsule by any means.)
The health, safety, and well-being of our patients is top priority here at the Weinberg Family Cerebral Palsy Center. If you have any questions regarding physical or mental health concerns, please call us at 212-305-2700.
I am 29 years old and in recent years, as a man living with Cerebral Palsy, I’ve been trying to live as independent an adult life as possible – while still living with my parents.
How did you find the Weinberg Family Cerebral Palsy Center (WFCPC):
I have been a patient of Dr. David Roye’s since I was 8 years old, before the Weinberg CP Center was founded. As the Center developed, Dr. Roye introduced me to the WFCPC community, and I have been involved ever since.
How has the Weinberg Family Cerebral Palsy Center impacted your care:
I really felt the need to meet other people with cerebral palsy who are also strong, smart, and independently minded. Dr. Roye told me about the Weinberg Center and the possibility of there being a support group. I knew about the Weinberg Center before the support group was even set up, and I have to tell you I’m so grateful for this support group. We meet once a month but even I didn’t realize how much I needed it, even if it’s only once a month.
What is one thing you would like people to know about the Weinberg Family Cerebral Palsy Center?
After joining the Weinberg Family Cerebral Palsy support group, I have formed lasting friendships because of it: I’ve been to several Broadway shows with someone I met through the group. I also met a friend that ended up being my date to my best friend’s wedding. I know it sounds cheesy but I would tell other people with CP to join the support group because you’re not alone, there are other people out there dealing with similar struggles. There are other ways to meet people with cerebral palsy, Facebook groups, message boards,etc., but all those can degenerate into pity parties… and something like a support group can give you so much more.
It was May of 2004 when David Justo-Cruz was born 9 weeks early and immediately incubated at the hospital. His mother Lorena was told soon after by the neurologist that David was showing signs and could be diagnosed with cerebral palsy. Lorena didn’t notice much of a difference with David compared to other kids because he was mentally well and active. It was when he started to fall behind physically and around the time David should be learning how to walk that Lorena knew she needed to see a professional.
Lorena took David to a neurologist who ended up telling her that David will never walk. After getting that devastating news, Lorena did what was best for David and began getting second opinions all over the country and even back in her home country. Along that journey she was recommended to a neurologist Dr. Cigdem Akman at Columbia Medical and NYP, who saw David and referred her to orthopedic surgeon, Dr. Joshua Hyman. David was just a little over 1.5 years old when he saw Dr. Hyman for the first time. From that point on, Lorena and David knew they were not going anywhere else. “Dr. Hyman was very sweet and patient with us and actually explained everything to me, ” said Lorena.
Dr. Hyman took care of David and monitored him in different braces over the years. He also had David continue with PT and OT until he was ready for surgery at age 7 in 2011. “Dr. Hyman prepped us years in advance for what the best plan would be for our family in the future, I am so thankful for his care and outlook for David long term.”
David ended up having a bilateral medial hamstring lengthening, bilateral achilles tendon lengthening and bilateral distal tibial derotational osteotomies in 2011. Five years later in 2016, he than had a bilateral proximal femoral osteotomies and in 2017, when he was 12 years old, had a right distal tibial derotational osteotomy and Dr. Hyman also removed the plates in his leg. David was also one of the first patients to be a part of the Weinberg Family CP Center at Columbia University Irving Medical Center when it opened in 2013 and stayed under the care of Dr. Hyman.
“I have faith in God and it has been hard journey, but David is my champion, his attitude through this process along with the greatest doctor he could have, Dr. Hyman, has made it easier. I am so happy with the results and it is hard to put into words how we feel about Dr. Hyman, we just love him.”
In 2016 , when David was in 6th grade, he applied for the Lang Youth Medical Program at NYP and was accepted for the six year long program. Now almost 5 years later, he is close to finishing up the amazing program, and has even participated in a white coat ceremony that Dr. Hyman attended. The Lang Youth Medical Program was started in 2003 by NYP with a mission to inspire youth to achieve their college and career aspirations through hands-on learning and mentorship at a world class academic medical center.
In his free time, David, who was told he would never walk in his life, is thriving in basketball and has a passion for anything to do with music and singing. He is doing everything he wants now, whether it is working out or dancing he doesn’t complain about the braces he has to wear it’s a part of his normal. “You can tell him you can’t do this and he will figure out a way to do it,” said mom Lorena.
Now in 2020, David has hit a milestone that both him and mom could never imagine, he is now at the point where only a yearly appointment and check up is required. For someone who has practically grown up in the hospital and doctors office waiting rooms and has multiple surgeries and appointments, this is a milestone to be proud of. “We look forward to seeing Dr. Hyman every year and are both excited for David’s future successes in life.”
The uncertainty of COVID-19 brings about a vulnerable time for everyone but especially for those with mental illness. It’s important to know that 1 in 5 adults in the US experience a mental illness in any given year. For those with anxiety and/or depression, this time can be even more challenging. The social work team at the Weinberg Family CP Center is here for you. They share some general “tips” on coping with social distancing:
Keep a routine. Maintain normative sleep patterns. Try to get in bed/wake up at the times you would if you were going to work. People thrive in routine/structure. Try to keep that as stable as possible.
Spending time with friends/family from afar. Social distancing does not mean being antisocial. Take this time to catch up with others and check in with people in your inner circle whether it be a phone call, text, virtual hangout, or email. You can also watch a movie or show and watch it at the same time or even have a virtual game night!
Take advantage of your free time. Is there a project you’ve been putting off? A desire to complete a puzzle? Listen to apodcast? or read that book you’ve always wanted to read but didn’t seem to have free time? Find something that you’ve been wanting to do and take advantage of this time inside.
Try to relax. Make a calming playlist, journal, or practice meditation/yoga methods that can help relax your mind and body to get you through this stressful time.
Support the greater good. If you can’t find something that is fulfilling to you and your time, focus on helping the community. Seek those in need; elders, kids who are out of school totally, people with low immune systems etc. and see how you can help. Maybe you can’t physically go food shopping for them, but maybe you can find someone who can. Use your feelings of isolation/boredom to fuel support for the greater good.
Talk to a therapist. Having a professional that can help you with your anxiety and depression is so important, especially during this stressful time. Virtual therapy can be such a powerful tool and during this isolating time, your mental health needs to be a top priority. A therapist can help you and your mental health in numerous ways whether you know you need therapy or not.
For those with anxiety: try to limit the amount of news coverage you watch. It can become all-consuming. Rather, make sure you’re watching coverage by medical experts- not necessarily the politically-motivated media and not all day, every day.
For those with depression: this is a unique time, especially with social distancing it can exacerbate symptoms. At this time, it’s important to remember you’re not alone. Journal your mood/feelings and accept help from others. Crises can often too bring out the best in people- accept support. It’s helpful to some to remember that you are not alone during this time- we are all affected and sometimes that “mantra” can help counter the feelings of isolation.
If you would like to talk with a mental health professional please call 212-305-5616.
If you would like to talk with someone for supportive counseling, advocacy, or if you have any barriers to coordinating care during this time, please call 212-305-2700.
Lorena and her son David who is now 16 years old has cerebral palsy. He has been a part of the Weinberg Family CP Center since the very beginning and a patient of Dr. Hyman’s for nearly all of his life. Lorena gives us insight into her and David’s experience with WFCPC.
How did you find the Weinberg Family CP Center:
When David was around 1.5 years old is when we started coming to NewYork-Presbyterian and Columbia University Irving Medical Center, before the Weinberg Family CP Center was even created. I noticed David was falling behind physically around the time he should be learning how to walk. I saw a Neurologist who told me that David will never walk in his life, so I did what was best for David and began getting second opinions all over the country and even back in my home country. Along that journey I was recommended to a neurologist Dr. Cigdem Ackman at Columbia Medical and NYP, who saw David and referred us to Dr. Joshua Hyman.
How has the Weinberg Family CP Center impacted your care:
The Weinberg Family CP Center has impacted David’s care because I have learned different pieces of advice from the Center and also from other parent’s experiences when they have expressed themselves at different group meetings offered over the years that really helped us in our journey and David’s overall care.
What advice can you give other parents:
The advice I would give to other parents is to never quit, to have faith, patience, and lots of love for their children. As parents, we cannot ever get tired of helping them get better. The reward for both the parent and child you can receive by persevering is so worthy and gratifying in the end. Also, as a parent I have learned many things I didn’t know. I feel more comfortable asking questions now, so don’t be afraid to ask questions.
What is one thing you would like people to know about the Weinberg family CP Center and Dr. Hyman?
Well, it’s really hard for me to find the exact or perfect words to express how David and I feel about Dr. Hyman. All I can say is that I’m so thankful for everything the WFCPC and Dr. Hyman has done for David and we are so grateful to have Dr. Hyman in our lives the last 15+ years. He’s the best doctor and human being and we love him!!
What does David like to do in his free time?
In his free time, David, who was told he would never walk in his life, is thriving in Basketball and doing everything he wants now, whether it is working out or dancing he doesn’t complain about the braces he has to wear it’s a part of his normal. “You can tell him you can’t do this and he will figure out a way to do it,” said mom Lorena.
On Friday, February 28, 2020, the Weinberg Family Cerebral Palsy Center hosted our Second Annual Adaptive Ski Trip. We had six patients, ages 10 to 35, and their family members who joined us at Windham Mountain for a beautiful day of skiing and fun!
The patients participated in ski lessons, led by certified instructors from the Adaptive Sports Foundation. ASF has been providing sports and recreation opportunities to thousands of children and adults with both cognitive and physical disabilities since 1984. For almost every single patient that joined us this year, it was the first time they had ever been skiing or on the mountain with snow. The reactions of the patients were just as great as the parents. “We had such a great time, I have to figure out how we can make this happen more often, this has really changed my child’s life,” said one mother.
A special thanks to faculty and staff at the Weinberg Center for making this day possible!
If you would like to be added to the waitlist for next year’s ski trip, please email email@example.com.
Note that the author prefers identity-first language (e.g. referring to oneself as a “disabled person” rather than a “person with a disability.” However, both terms are used in the following piece.
More elusive than the Loch Ness Monster! Less media coverage than squirrels eating cheeseburgers! Harder to spot in the wild than Bigfoot! Who are we? Disabled adults! If you went based on the media and most existing social service systems, it would be easy to think that folks with cerebral palsy (CP) vanish into thin air when they turn 18 in a triumphant blaze of paperwork. But don’t believe the stories. We’re here, lurking in your very neighborhood! Jokes aside, we’re actually everywhere…doing mundane things like working, going to school, and complaining about the lack of walker color options once one grows out of the pediatric size.
Do you have a kid with CP? Are you confused by all the acronyms in disability land? Are you wondering what life will be like for your child? Putting on some AFOs (leg braces) and wondering how people survived before Velcro?
It can be overwhelming looking for information and finding the best resources for (and with) your loved one with CP. But as you embark on this adventure, don’t forget disabled adults. We are a unique and tremendous resource. I am 27 years old and I love meeting kids with CP. Besides enjoying the nostalgia rush when I see tiny AFOs with pink straps, I truly enjoy showing younger people with CP the way. It is the honor of my life to play some role in helping the next generation of “my people” thrive. And when we work together, there is less fear, more joy, and more rousing discussions about cute sneakers that fit over AFOs.
I cannot speak for all adults with CP, but as one member of this fabled, fabulous group, here is some of what I’ve learned and would like to tell parents and guardians without CP raising kiddos with CP:
We are the real experts and carry with us a trove of real-life experience.
Adults with CP have a perspective that no non-disabled parent, sibling, therapist, or doctor can offer. We have the scoop on cool camps, recreational programs, and equipment. Most importantly, we know exactly how it feels to have CP. Want to know what life is like with CP? Listen to those living this story. Our perspectives are often ignored and drowned out by the opinions of parents and professionals without disabilities. But if you want real (probably overpriced, adapted, AFO friendly) boots- on- the- ground experience, adults with CP are your best source… because we’ve been there.
Help your child connect with other people who have CP and other disabilities early in life.
Community is so important. Peers who are living with CP and other disabilities can offer support and camaraderie that no one else can. The disability community has its own history, humor, and rituals. Our shared experiences are vital. In fact, a 2017 research study by Silverman et al. concluded that young people who have friends with similar disabilities report a higher quality of life. The sense of belonging among my disabled friends has sustained me throughout my life and given me pals to turn to for those “found a fry on my footrest before giving a speech” moments that…well, only make sense if you’ve been there.
Ditch the “overcomer” narrative.
Society puts a lot of pressure on kids and adults with disabilities to “overcome” the disability. Mainstream culture has told us that we are victorious, successful, and courageous if we minimize our disabilities or encourage others “not to see the disability.” However, many of us feel that CP is a part of who we are and should not be treated as something to overcome– because it’s not a negative trait. Having CP comes with many struggles, but also with many joys, like the people and places I’ve come to know because of my disability. The expectation that I should overcome an essential part of myself is deeply upsetting. Instead of focusing on overcoming my CP, I prefer to focus on living well in a disabled body. If you can’t see my disability, you can’t see a full picture of me.
Don’t be afraid of mobility aids.
Unfortunately, many people have been taught that wheelchairs, walkers, and crutches are symbols of “giving up.” But assistive devices do not have to be constraints—think of them as tools. My wheelchair has allowed me to keep up with non-disabled people, go out without an assistant, and navigate without fear of falling. If anything, my wheelchair has made me more independent, safe, and comfortable. What if we reframed assistive devices as symbols of freedom? There’s still time!
Be prepared to talk about ableism.
Ableism is discrimination and prejudice based on disability. Sadly, every adult with CP can share multiple instances of ableism. It doesn’t always look like overt bullying. Sometimes, it looks like an event not made accessible for wheelchair users. It can look like the exclusion of disabled folks in the media. It can look like being passed up for a job interview when the employer gleans that you have CP. Conversations about ableism are difficult and often uncomfortable but always necessary. Naming these occurrences will help your children to feel that their experiences are valid and fully acknowledged. Helping young people with CP to cope with ableism is essential to supporting their mental health. Helping them to cope also means knowing that many experiences with ableism can’t be fully understood by someone without a disability. The best way to be an ally in these cases is to listen.
Know that independence looks different for everyone.
The stereotypical idea of independence for people with CP is walking unassisted and performing all activities of daily living on one’s own. But independence is not one-size-fits-all and it doesn’t have to mean doing everything on your own. For me, independence means hiring and supervising my own personal care assistants—I will always need help but I want choices about who helps me and how they complete their tasks.
And finally…Don’t let therapy rule your life… the occasional “day off” won’t halt the universe.
My mother and I were recently reminiscing about when I was a little girl and she felt like I would shrivel up and disappear if I missed one session of physical therapy (PT). I am fortunate to have had great PTs, but sometimes a skip day can be a good thing. Don’t get so bogged down with appointments that you forget to live. In retrospect, we wish we had realized sooner that the world doesn’t stop turning if one day Dollar Day at Carvel sounds better than physical therapy. It tastes better too!
So, if you have a child with CP and they see me on the street, please stop and say hello! I am eager to compare wheelchair colors, blabber on about how your kid should go to summer camp, and compliment them on their cute AFOs.
Most of all, I want to show kids with CP that adults with CP exist…and we are rooting for them in everything they do.
So, if you have a child with CP and they see me on the street, please stop and say hello! I am eager to compare wheelchair colors, blabber on about how your kid should go to summer camp, and compliment them on their cute AFOs. Most of all, I want to show kids with CP that adults with CP exist…and we are rooting for them in everything they do.
Kathleen is a 27 year old from Floral Park NY and one of the Weinberg Family Cerebral Palsy Center’s first patients. To learn more about Kathleen check out her patient spotlight here.
My name is Tucker Salovaara and I was born and raised in New York City. I’m 27 years old and I have been a patient at the Weinberg Family CP Center since it opened in 2013. I work for a great organization called Theater Breaking Through Barriers (TBTB) as a social media manager. They put on really interesting plays and it is a great group of people dedicated to making sure that we in the disabled community are included in the theatre. Throughout my life I have learned to advocate for myself. Because of my disabilities, I have had to work extra hard to prove to people that I can do anything that I put my mind to.
I was fortunate to be an intern at the Mayor’s Office for People with Disabilities after I graduated from college. That was a great introduction to people and organizations that can make a difference. I have greatly enjoyed getting to know more of the disabled community through my work with the MTA Access-A-Ride Committee, which works on improving services in public transportation. We have made some good progress but obviously have a lot more room for improvement before those of us in wheelchairs can get around as easily as our able-bodied peers. I also volunteer my time to work for an organization called AXS Lab/Map as a web accessibility consultant. They provide information to help people get around town by rating accessibility of businesses and public places. I try to stay “plugged in” with the greater disability community through Google groups, listservs, and participate in protests and attend hearings on important topics relevant to our community. I also participate in the Weinberg Center’s support group for young adults with CP, which has been a nice way to meet new friends who face similar challenges.
Why Being Active in the Disability Community Matters:
You Are Not Alone. We are all in this together! One of the most important lessons about advocacy is that together we are stronger than if we go it alone. Even if you don’t think you initially have a lot in common with others, you will share similar experiences and find common goals.
Your Voice Matters. What you have to say is important. Your experiences may shed light on additional issues that others have not thought about. Change only happens when people make the effort to speak up about their concerns!
You Can Make a Difference. In order to promote change, you need to want to change something. What is it that would improve your life?
Put Your Ideas Into Action. The other critical piece is acting on your beliefs—As Gandhi said, “Be the change that you want to see in the world.”
Be Open to Trying New Things. Always have an open mind and an open heart. You might just be surprised by your own ABILITIES!
I think that many people in the disabled community are afraid to get involved because they are afraid of being adversely judged or being rejected. It’s corny but never forget—nothing ventured, nothing gained!
My advice to those who feel afraid/judged or don’t know how to get involved would be:
Don’t be afraid to share your opinion, because your voice matters
Think outside of the box, try different things and find something with a group atmosphere, like a support group to get started, so that you can feel more comfortable getting involved
Be confident. Every story matters and no one can argue with your experience!
Don’t be passive. Be bold in spite of what you think people expect of you or how they may judge you
Push yourself to try something new--even if you feel vulnerable, try it–you might like it! That is what happened to me with the WFCPC support group, which I really enjoy.
For me, getting involved with the MTA Access a Ride Committee helped me put my frustrations with transportation in NYC into action. I was fed up with the system and wanted to do something about it. People had to listen and I was no longer being passive. Now, I help the MTA by testing and reviewing new products and initiatives like the Access A Ride app which helps riders track their rides. We also have a pilot program through Curb for wheelchairs which is much quicker than AAR vans.
Having grown up on the Upper East Side, I was constantly aware of visitors’ challenges with accessibility issues in Central Park. I had an idea to create a map of accessible pathways and worked with the NYC Parks Department and the Mayor’s Office for People with Disabilities on such a project. I tried to come up with a solution to a problem that I saw shared by many others.
If I could empower anyone by saying something, it would be “Don’t be afraid to share your ideas and fight for your rights.” We need more people advocating for and in the disability community because improvements are needed and our lives matter.
Tucker is a patient of the Weinberg Family CP Center and an active member of the adult support group. To learn more about Tucker, check out his patient spotlight here.
Sitting down to write this blog post, I can’t help but chuckle. If someone had told me, even a few years ago that I would one day offer advice, on life as an adult with CP, chances are, I would have laughed in your face and said, “you must be mistaken, you got the wrong guy.” Everyone that knows me has heard me say, “I am the world’s worst disabled person,” and that “I should get my CP card revoked.” You see, my parents and caretakers always played down my disability, making me believe I can do anything in spite of it. In large part that has worked out well. With their help I’ve been able to do amazing things like climb to the top of the Acropolis in Greece or go into the deserts of Morocco.
As I got older, my disability started affecting me in new ways and that took a lot of getting used to. Despite the progress I’ve made, I have a long way to go. With that being said, I would like to share with you what I’ve learned up until now. So, without further ado, here’s my imperfect list of tips and advice for a healthy and happy adult life with CP:
1. You have CP. It affects your life, but it doesn’t define who you are.
Like many of the items on this list, this piece of advice is deceptively simple. We all know that CP manifests itself in different ways. I use a wheelchair. When people see me coming down the hallway, they know I am disabled even if they don’t know I have CP. I have other friends who use canes, others who can walk unassisted and even drive by themselves. However, we pretty much all have people in our lives who care for us and help us see to our daily needs. Typically, these people are either aides or parents. In my experience these caretakers have two extremes. Either they are too scared to acknowledge that we have CP and therefore life has to be different for us in some ways, or they are overprotective and want to wrap us in cotton to make sure nothing ever happens to us. The tricky part is for everyone to find their own definition of what a life with CP means.
For instance, over the years I’ve learned that you can acknowledge your CP and can make jokes about it without giving into it. These jokes may be distasteful and unsettling to our caretakers but acknowledging that CP is a part of our lives and something we deal with everyday is by no means admitting defeat. Besides, there is a lot of good that can come of it. For example, I am a diehard opera fan. It’s one of the greatest joys of my life. It even helps me through not only the daily challenges of life with CP but also the long-term ones. And yet, part of the reason why opera is so special to me, is because one of my aides who I am still in touch with, gave me my first recording of an opera when I was two years old. Part of the art of living with the disability is recognizing and celebrating the good while having the strength and patience for the time when things get hairy. Also, it’s important to have perspective and don’t sweat the small stuff because:
2. The way you interact with your disability changes as you get older.
When I was little, I thought being disabled consisted only of needing assistance with activities of daily living. Just so we are clear needing help to bathe myself, dress myself and use the toilet was annoying then and is annoying now. However, when I was little, I wasn’t interested in girls nor was I looking for a relationship. Now that I am looking for those things at the age of 29, I am fully, sometimes painfully aware of how my wheelchair is perceived in a social situation. The good news is when you really want something you understand better what’s really important to you at this point in your life. All of a sudden, the petty annoyances like needing help with toileting are not that important. Also, once you figure out what’s really important to you, you can think of a plan to get it. This means taking a long hard look at the challenges that CP poses to achieving your goal. Once you’ve done that you have to realize that:
3. In order to achieve your goal, since you have a disability, you might need to think outside the box, and look for unconventional solutions.
When I was in my first year of grad school, the movie, “The Sessions,” came out. In the film Helen Hunt and John Hawks star as a sex surrogate and a disabled client. After the film, I published an essay in Salon magazine about the challenges of having a physical disability and wanting a relationship. About six years later, I’m happy to say that I have made progress in that area of my life. But, that progress only occurred when I allowed myself to become more comfortable with my disability. I had to realize that because I have CP, I have to live with it and therefore think outside the box. For me, part of that process was acknowledging that I needed extra help for simple activities like having sex, which able-bodied people take for granted. Fortunately, I have a great group of friends who, by simple acts like taking me to the bathroom, have done more for my independence than they will ever realize. Which brings me to my next point:
4. It’s okay for adults with CP to ask for help from friends.
Just because we are disabled doesn’t mean that people who take care of us need to be medically trained aides or nurses. Once you come to this realization, the simple acts that people do, like pushing you around the room at a Hanukkah party so you can meet people, take on a very special significance. This is true, no doubt about it, but implicit in that realization, is the fact that you are not a burden just because you are disabled. The right group of friends will help you with your daily needs simply out of the goodness of their heart. As hard as it is to believe, it is not worth being stunned over. To this day I still have trouble with this. Even so, it is always of paramount importance to recognize the progress you make towards your own independence even in the most mundane of activities. It gives you perspective and makes you appreciate just how much you can do on your own in spite of having a disability. Additionally, while there are good people who will help you for no special reason other than their own nature, it is extremely important to make sure that these people know, whether they be aides, family or friends, that they are not expected to go out of their way to do anything extra for you. I always tell my aides, “Anything extra you want to do is appreciated but not required.”
5. Always have a back up plan.
People who help you need to know that they can say no to you. If they can’t then you become a burden on others. The relationship between the disabled individual and their friends or aides is a surprisingly intimate one. I for one get annoyed when people compare the work of an aide to the work of an employee at an office job. Those people are not required to take their bosses to the bathroom or see them naked in the shower. As a result, there has to be open communication and people who help you need to be able to have a life of their own. It’s important that aides should never see their work as a chore. Yet at the same time, as you grow and your needs change, your aides have to realize that you are not helpless. They might be there to assist you, but you are certainly not in their charge. You are an adult and not a baby, and you should not be afraid to speak for yourself. That being said, accidents will happen, and the road will occasionally get bumpy, so having a back up plan is key.
6. Learn the art of anticipating what cannot be anticipated.
If you made it to this point in the article, you should be comfortable with the fact that despite wanting your independence, you are disabled and people around you will always see you to some extent as being disabled. You will always be a child to your parents. This is something that is really hard to navigate if you are able-bodied, let alone if you have a disability. There will be setbacks, you will fall down, sometimes literally, as in my case when I fell down two steps in my wheelchair in Battery Park. Ever since then my parents become extremely nervous if I am even within a five-mile radius of stairs. Alright, maybe that’s an exaggeration but you get the idea. But you can’t let that stop your drive for greater independence. All you can do is reassure people that you will be safe, and take your safety seriously above all.
At the same time falling down two steps which were difficult to see is actually an apt metaphor. Life with a disability will always be challenging no matter what. You will find yourself in situations that may seem impossible. And, although I may have a sick mind, I believe the challenge is part of the fun. The first thing you must do when life gets rough, regardless of whether you are disabled, is not to panic. Take a deep breath, you can still point your finger at the ceiling and shake your fist at God, but don’t panic. You will get through this, even if you need help. And, nine times out of ten, surprisingly you don’t. The key to life with a disability is a cool head, and the recognizing that life with a disability might be a challenge, but it’s an external one. Keep your humor, keep your passion, keep your drive, accept help when needed and above all keep your disability external. Of course, it’s a part of you but it doesn’t define you.
Greg is 29 years old with CP and found the Weinberg CP Center through Dr. David Roye. He has felt the need to meet other people with cerebral palsy who are also strong, smart, and independently minded and has found that in many ways, one being the WFCPC support group. To learn more about Greg, check out his patient spotlight here.