My name is Jon Bateman. I’m 35 years old and I was born with Spina Bifida. Through my years of experience living with a disability, I’ve come to realize that the experience of being born with a disability is not discussed often from the perspective of the individual going through the circumstance. Here are some key things I would have told myself both as a child and as a young adult:
• Medical professionals will speak to you and your family like they know exactly what your capabilities are and will often prescribe courses of action to you based on their perceptions only. These people do not have all the answers. They can advise and they can sometimes be helpful but they cannot know your experience. Do not let them determine your future based on “best practices.” You know yourself and your family knows you. Stick with your intuition. It’s usually right.
• Many people may have very small expectations of you. Don’t allow yourself to believe you are incapable. The truth is no one really knows your capabilities and there are those around you who will lower their expectations in hopes of protecting you from pain and rejection. If you believe them and don’t push yourself you’ll only run into pain and rejection later when you’re not equipped to deal with life independently. The struggles you go through when you’re young will prepare you for a better future. In that sense, you’re no different than anyone else. Everyone has to learn all the many life skills. Don’t let others stifle your ambitions. It’s your ambitions that will create your future quality of life. To put it simply - Be what you wish to become.
• Your disability is something very few people experience in their own lives. Your advantage, being born with a disability, is that for you it is completely normal, though often difficult and time consuming. Regardless, you are the biggest expert in understanding and in dealing with this situation. Don’t measure yourself against anything else other than what you need to do to accomplish your dreams. Be realistic yet hopeful about those dreams. You know your capabilities and if you think you can do it. You definitely can. Don’t let others convince you otherwise.
• Understand that people are generally not against you. They are scared of your circumstance and don’t know how to address it. So, like many people, they will cope by laughing at or trying to ignore what they fear. Do not be intimidated by this. Throughout your life, people will sometimes blame you for their own inadequacy. At worst, they will tease and ridicule you so that they can justify why they don’t need to take time to address what they fear and try to understand it. Others may try to avoid you or will try to silence you by suggesting you have an attitude problem because you are seeking things that make them uncomfortable.
• You have the right to life, love, education and employment. You will have to work hard to obtain these things but if you put in the effort and the time, just like everyone else, then eventually the opportunities that are right for you will come to you. The only thing you must do is continue putting in the effort and continue listening to those brave enough to tell you honestly what you need to do to improve.
• People will be afraid to tell you things honestly. They may think you’re fragile and won’t want to hurt your feelings. Many will want to reward you for breathing or they’ll accept whatever you give them without expectation of a better effort. This does not help you. However, there will be some people who will tell you honestly when your work isn’t good enough or when you are going about things in the wrong way. Those who are honest with you are your friends. Cherish them and go back to them often for perspective and advice.
• Don’t be too hard on yourself. Very few people are dealing with everything you have on your plate. You’ve already become an extremely strong person just by doing the things necessary to successfully live life with a disability. Gain confidence from the fact that you’re an expert on subjects most people have no clue about. You know how to problem solve, you know how to adapt and you are emotionally strong. In life that’s about 90% of all you need.
• Understand that you’re in a costume every day of the year. You may look different than everyone else but your disability is not who you are. It has about as much to do with your soul as your hair color. It’s a part of you but it’s just one of many features. Unfortunately, people may project uncertainty, emotional pain, anger and sadness onto you simply because you appear to be in a situation they fear. This is both a blessing and a curse in your life. By the nature of your circumstance, you’ll get to know people in fascinating and wonderful ways. They will share incredible things with you and your friendships will be deep but there will be those who can’t handle you and who may be quite negative toward you. Stick with your friends and don’t get caught into the trap of trying to impress people for acceptance. It does not work. Ever.
• If you worry about the future, don’t. Your disability is much less important than how you choose to live your life. If you have hope, a sense of humour, ambitions and a positive outlook on yourself and other people than you will acquire all that is important in life. It likely won’t come to you quickly or easily. It’s likely to come over time through a series of small victories. Keep moving forward, if people stare at you, stare back and smile. Learn to communicate and always put the effort into first asking for and then working toward what you want.
• Exercise regularly and drink lots of water. Your health even with a disability is likely to be at its best when you are young. Like everyone, you need to maintain and preserve what you have. Do what you need to do to stay active. If you stay on the couch you’ll remain on the couch even when you don’t want to be there.
• Many people want to help you succeed but they don’t know how your life works and they’ve been taught to mind their own business by their parents. Despite this, people are curious about you. Often, they admire and are inspired by you. You can help them see life from a perspective that no one else can. Understand what a great power that is and then learn to connect with these people around the things you have in common. Do not fear people. Once they understand you, many people will see you over the disability and will help you to accomplish the goals you share with them.
Jon Bateman has worked for more than ten years as a professional communicator. He speaks on disability issues from the perspective of an older adult living with the disability. Currently completing a Masters degree in Community and Economic Development from Penn State University (World Campus). He is a communications strategist for the City of Calgary, Alberta.
President, Calgary Sledge Hockey Association
Chair, 2011 World Sledge Hockey Challenge
Board Member, Accessible Housing Society (City of Calgary, Alberta)
Columnist, Calgary Street Talk
Access Guide Canada magazine, Winter 2001, "Victory on the Ice: and they said he'd never play hockey"
When Jon was a child, his photo ran in the local paper with the caption: "He’ll never play hockey." He proved them wrong, becoming not only a sledge hockey player but a team coach who inspires his peers with disabilities to victory.