If your friends and family had to describe you to a stranger in 5 words, what would they say? Would you be a parent, brother, spouse, daughter? What about your personality? Would you be known as intelligent, generous, stubborn, kind? Maybe they would focus on your appearance. Are you black, tall, fat, bald? You are many things to many people, and there are countless ways those close to you could describe you. In fact, I would wager that if you asked 50 people to do this, that every list would be different. One of the hardest things for me to deal with in terms of my disability is that when people see me, either in person or in their mind’s eye, they see my disability or my wheelchair first. I would bet my paycheck that every list for me would somehow include my disability. That is not to say that these people treat me differently necessarily, but when they would go to describe me to someone, I guarantee that early on the words “Well, he is disabled” would make an appearance. This used to be very difficult for me because I don’t see myself as a “disabled person,” and the one thing in my life that I have worked harder to achieve than anything else is to not let my disability dictate how I live my life. Even though one of my goals through Roll Models is to help change the way people see individuals with a disability, I do not hold anything against people that think this way. Not only do I realize that their skewed perspective on disabilities is created out of ignorance, which most likely is not their fault, but I also have fallen prey to these distorted views, so I know how difficult it can be to overcome them.
I have already discussed many of the amazing services and opportunities that MDA provides for disabled individuals and their families. Of all of the amazing things that they do for these families though, for most there is one event that stands out above all the rest,
MDA Summer Camp. For most children involved with MDA, the best week of the whole year is the week of Camp. They get to go to a regular Summer camp with their very own specially trained counselors and experience everything that able bodied kids do. They do everything from hiking, fishing, swimming, water balloon fights, and of course sitting around the camp fire singing “Kumbaya.” And the campers get to do all of this away from their parents, giving them a feeling of independence they may only get that one week every year. This independence also gives the parents a week of not having to care for a disabled child, so it is a break for them as well. This is an incredible gift that MDA gives to their families free of charge. Even though I visited MDA Camp for an afternoon several times growing up to see what it was like, I never took advantage of this amazing opportunity to have fun and meet some interesting people. Although I told myself that I didn’t want to go because I wasn’t an outdoorsy, nature type person, which is true, in reality I didn’t want to go because I didn’t want to be associated with “those people.”
Since my parents always treated me like a “normal” person, I developed a self-image that didn’t involve my disability. Yes, I was in a wheelchair and had to overcome more than most people, but that isn’t how I saw myself. It was as much a part of my identity as being right handed, having brown hair, or having the prettiest blue eyes you have ever seen (Don’t lie, you noticed). This perspective of equality with the rest of the world was great for helping me learn to push myself to succeed, never give up, and dream big, but in terms of forming my identity as a disabled man in an able bodied world, it was a little confusing. When I saw other disabled people growing up, I would get very uncomfortable. I saw them as different from me, and I didn’t want able bodied, “normal” people to see me with them, because I didn’t want to be lumped in as just another disabled guy. I wanted to be judged as who I thought I was, and not as just another crippled kid. I saw myself as a regular kid, and that is how I wanted the world to see me. You can understand then, how attending a Summer camp filled with other disabled children would be my worst nightmare. I was so afraid of what other people would think, that I not only missed out on numerous Summers of fun, but I also judged the other campers the exact same way that I didn’t want to be judged by the able bodied world.
Now that I have grown up, learned some important life lessons, and gained the wisdom and maturity that comes with overcoming adversity and age, I can see what an awesome opportunity I missed out on because of my own insecurities about being disabled. I am able to see now that the fact that I have spinal muscular atrophy is part of who I am, and it has played a large role in molding me into the world conquering, badass I am today. Just because my disability is a part of my identity, and a part that I am proud of at that, does not mean that I let it change my perspective of being equal to “normal” people or influence my decisions. It is just one more piece to the Scott Drotar puzzle, just like great storyteller, student of life, and foodie. It is just another word for people to put on their list, and it is one that I am now quite proud of. I am honored to be grouped with other people who have had to find the strength to get through all of the difficulties of living with a disability. I have learned and been inspired so much by the connections and relationships that I have formed with my fellow “Roll Models,” and I am so thankful that through my speaking program, I have gotten to know even more of these incredible individuals.
Having gone through this difficult process of finding my identity as a disabled man in the society we live in (and I am still working on this daily), is one of the things that drives my passion to help other disabled people find their place in the world. I can do this through changing the public’s perception of disabilities, and by helping people navigate through the complicated and confusing feelings and thoughts that come with learning to live a happy, successful life with a disability. I do this because it is so important to accept every part of who you are as you develop and grow as an individual, as it was only after I was able to come to terms with my own disability that I was able to really be happy and comfortable with who I am. What part of your self-image do you try to hide or stay away from? Chances are, this part of you has had an impact on who you are, and I would hope, that you like who you are. So, how bad could this piece of you be, if it helped you grow into the beautiful person you are today? Take some time to think about everything you have experienced and learned from this part of who you are, and ask yourself if you would be the person you are without it. Once you accept the fact that this is just another piece of your puzzle, and that it doesn’t have to define you any more than you let it, you will be much more confident and comfortable in your own skin, and this will bring a lot of happiness to your life.