My Imperfect List of Tips and Advice for a Healthy and Happy Adult Life with Cerebral Palsy
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.